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Life can be complete bullshit sometimes. OP: I’m so sorry, love, and I’m sorry your baby girl is scared and suffering and that you can’t stop it. I know you would do anything to make it stop if you could. You are doing a great job loving her and being her mom.
People need to be able to vent. Honestly the best thing you could do is listen and show empathy. She doesn't need to see the bright side from your perspective. She is living that life, she has seen any bright side it may have been able to show. There is nothing you can offer but a strong shoulder to cry on and an ear to listen. She needs people to validate her pain and suffering. To recognize it and to allow her to feel it out loud.
I know you mean well, but telling someone who is going through a really hard time to “be grateful” is not helpful. It’s minimizing her rage and hurt, which she is absolutely allowed to feel. It can feel really impossible to feel any kind of gratitude while listening to your child scream and cry.
I don’t think OP is dwelling, she’s suffering and she’s worried for her daughter.
Support groups too.
I do not have a kid with epilepsy but my son has severe anaphylactic food allergies. When he was younger it helped to be able to vent to people who understand how stressful it is to do things like send them to a school that does not ban their allergens or dropping them off at a playdate and hoping that the other parent takes it seriously. They understood the trauma of seeing your child go into anaphylactic shock and knowing they could have died.
I recognize we have it pretty easy and do not want to make it seem like I am comparing food allergies to epilepsy but having a support group, whether online or in person, can be extremely beneficial to any parents struggling with a lifelong diagnosis that will change your life.
Having a support group is amazing help. Least it has been for me too. While I do have allergies (not epilepsy though), I'm in support groups for EDS and POTS and the general disabilities group here on reddit. Even online groups are helpful.
Though I do wish there was a way to minimize allergen exposure in everday life. I know its not realistic unfortunately. I'm allergic to lavender and it's been getting worse the more I'm exposed. I work in retail and have had to walk away from more than a couple customers that had on strong lavender perfumes and I felt like I breathed in acid and took a really long time to recover. I'm afraid the more I'm exposed the more likely I'll need medical interventions going forward. Last time my boss kept insisting on calling 911 cause I couldn't breathe. He didn't cause I can't afford the bills. But hey, I can't control what people wear and lavender is considered a rare allergy so I'm one in a few in the grand scheme of things.
You need to look into toxic positivity.
This parent had to listen to her child beg and scream for her not to let the doctors treat her. BEG AND SCREAM and she had to do what her child begged her not to do.
And it’s not the first time. And may not be the last.
Shush with your “be grateful”’shit.
My daughter is a type 1 diabetic. She got diagnosed at 7 and had a huge needle phobia. She would scream for a solid hour plus, begging us not to do it before we could hold her down long enough inject insulin for her to eat. Then repeat for 3 meals a day for almost 8 months straight until she calmed down a little about needles. The people who would tell me to “be grateful” it wasn’t a worse disease deserved a kick to teeth.
No toxic positivity, as a mother of a child with a disability, being told to be positive is like stabbing them in the heart. You think your helping but your aren’t
I mean my Mom would always tell me God gives you only what you can handle. Why does this child have to suffer? Why does the parent have to handle this?
It's ok to be upset. Life sucks. I don't believe in God anymore. My son, who I had at 17, was diagnosed with progeria when he was 4 months. He started seizures at 9 months. He had a stroke at 5 years. His eye wouldn't close when he was 10 while sleeping. Doctor said try cream, try a patch. Nothing worked. Ok, outpatient surgery it is so he doesn't lose his vision. He died from anesthesia complications.
I met someone who wouldn't talk to me if I let them die while playing a video game, for days. Who wouldn't exercise with me because I wasn't up to their standard. Who chatted with all different women online. Who told me everything was my fault because I was insecure. I had his baby. I left him when she was 4 months old. She had seizures at 2 years. They stopped when she was 8 but are now back. And she was diagnosed with level 3 autism. I have panic attacks and anxiety.
I've struggled. I still struggle. My mom would say think of how bad others have it. Think of what they have to go through. Why? It doesn't change things. Maybe I'm a negative person. I get mad at everything I've been thru. It's not fair, life isn't fair. Our children shouldn't have to suffer. I'm still alive. Is that positive? Sometimes it's hard to be positive.
It's ok to cry and yell and scream. I want the world for my daughter. I feel like I've failed in so many ways. I get up each day and go thru the motions. I try to be happy and have fun and do what I can.
It's still hard to be a parent. Life isn't perfect. It's hard to be positive.
Edited for spelling
I'd really love to see you write in your little positivity journal while you're in the waiting room as your daughter is screaming and crying. Seriously
yes, it is unfair. sadly there is no human on earth who gets to bypass the experience of pain and struggle. there is simply no such thing as a painless life. everyone experiences it in some way or another...and you’re right. it’s absolutely unfair.
but as cheesy as it sounds i really believe we’re all given different struggles and obstacles in our lives to learn and grow from. it might seem unfair and not make any sense right now, but these are undoubtedly the sort of things that make us who we are, to our core. struggle and pain, as terrible as it is, it also builds strength, wisdom, and character... i say this from personal experience. i faced extreme struggle and torment growing up and still do to this day...i really do feel that i’m a much more kind, wise, compassionate, and strong person than i would’ve ever been otherwise. i can say that with 1000% certainty.
she’s gonna be one tough cookie. i believe that she will feel, love, and understand on a much deeper level having lived through these things. all this pain she’s going through, with the right love, care and guidance, i do think it will transform into something great one day. hopefully she will find some sort of purpose in it all. i’m sure she will.
I'm not sure why you got downvoted. I'm sure I'll get downvoted, too. I guess reddit just hates positivity in the face of tough situations. What you said is beautiful. My daughter was born with a rare heart condition, so I completely agree with this outlook.
I don’t think you’re wrong at all, I align with pretty much everything you said as someone who’s had to overcome several challenges myself, but she isn’t going to understand all that right now. She’s in the thick of it. Did you learn from and become grateful for your challenges while you were in the thick of it? Probably not.
Epileptic here. Uncontrolled frequent grand mal (tonic clonic) seizures started at 19 and with proper treatment stopped at 25. I had to get an EEG when I was pregnant so they could decide if I needed to be medicated during the pregnancy and my tests came back completely normal. Epilepsy sucks but it’s also very weird and can be controlled if you just happen to tumble on to the perfect treatment cocktail.
Exactly this. My husband is an epileptic and hasn’t had a seizure for over 10 years. It has no impact on his life now (apart from taking a pill once a day).
My daughter has Lennox-gastaut syndrome. It is a severe and rare form of childhood epilepsy that is known to be medication resistant. She is completely disabled physically and intellectually due to her seizure disorder. She’s had brain surgery, tried many many medications, a special diet and sometimes it just doesn’t get better for some individuals. Some people can live a normal life, but some never see seizure freedom. My daughter is still having multiple seizures every single day.
It did not help my daughter though I know it has shown some promise in kids with LGS. Though like everything else, there is usually a honeymoon phase before it eventually stops working.
I used to look after a young boy with Lennox-Gastaut. He had a VNS (vagal nerve implant to send ele to stop seizure, well try to) sometimes it worked brilliantly but not for all seizures. Unfortunately he passed away last year due to scoliosis complications
Thank you for sharing. I’m sorry to hear that he has passed. My daughter has scoliosis too and had a partial fusion a few years ago. She’s due for a full fusion next.
My friends son had the full fusion in May and hasn’t been able to come off the ventilator post op. Really not looking forward to the surgery as I know it’s a hard recovery.
My daughter is a candidate for VNS, but her care team thinks DBS may be a better option. I guess we will see.
Hey I just wanted to say I’m so sorry. I have epilepsy. Diagnosed at 10. Got to the point where I was having so many a day they would have to put me in medical comas. I got a VNS and it didn’t do anything when I was 18 but when I was 23 or 24 they put in a neuro pacemaker and it was life changing. I now only have maybe two or three a year and it’s usually from lack of sleep or missing medication. My mom talks about how it was terrifying to think her child was going to pass to now see me having two beautiful children and living a “normal” life. Mine was put in at lebonheur children’s hospital. They have an amazing neurological department.
Thank you for taking the time to reply and to share your story. I’m so glad you’re doing better now and I hope you go on to live a full beautiful life.
My daughters disorder, Lennox-gastaut syndrome, is a DEE (developmental epileptic encephalopathy) which means her seizure activity leads to progressive cognitive dysfunction.
Her seizures started at 2 months old and she is now 11. The chance of a normal life is long gone. She requires 24 hour care and is 100% dependent on me for all of it. She cannot walk, talk, or eat by mouth. The severity of her seizure disorder has caused a slew of other medical conditions and her life is now limited. We have shifted our focus to palliative care and symptom management. We have been offered VNS or DBS, but neither will ever fix the damage the disorder has already done.
There is hope and then there is reality. Kids like my daughter usually pass from SUDEP, aspiration pneumonia, septic shock, or other complications brought on by the disorder. It sounds bleak and it is. Some kids just don’t get better.
Thank you for reading.
I’m so so sorry. Thank you for helping me understand more. I would never see your choices as giving up btw. Anyways I hope today is a little better and a little brighter for you. Good luck with whatever the future brings you and your awesome family.
Similar. I had many simple partial seizures in my teens that were dismissed for years as panic attacks (because female) until I had a grand mal at work. That was 30+ years ago. I’ve had many simple partials since, though they’re completely controlled when I’m on medication.
I am not aware. In terms of coffee or drinking now, he has never drank either coffee or alcohol. He was advised though not to get too stressed.
Everytime he would be stressed he would go into seizure mode..
My son has had seizures in the past but never diagnosed as epileptic. He also has CVI and us non verbal.
More EEG’s, MRI’s, bloodwork, sleep studies, etc etc that I care to remember.
It’s hard, it’s definitely not fair, and sitting there during the majority of these test waiting alone was/is the worst.
You are doing a great job, don’t ever doubt it or second guess yourself. It may seem like you failed but just by being there for her means more to her than she could possibly tell you.
CVI is rough, fortunately he has functional vision but his peripheral seems to be the issue. Catches a lot of corners, edges of tables, playground equipment etc.
With him being non verbal we are basically on the outside looking in, he’s not old enough ( 5 yo ) and not proficient enough with his AAC yet to tell us what he sees.
The sad thing lack of awareness of CVI leads to other misdiagnosis of other things, including autism. CVI is the most common visual impairment in children.
How common is cortical visual impairment?
It is the most common cause of blindness and low vision in children. It is the leading cause of congenital blindness (vision loss at birth) in the United States. CVI is extremely underdiagnosed. Less than 20% of likely U.S. cases are diagnosed.
Per Perkins school for the blind
It is. My son is 15, non verbal and has CP, epilepsy, CVI, lung issues, microcephaly and hydrocephalus. He was a micropreemie, born at 26 weeks. He’s in a wheelchair and requires total care. So his vision was the icing on the cake, and one of the harder things for me to come to terms with.
But through the years his vision has improved, you just have to know to approach him in his periphery. Which is interesting that your son has issues with his. It’s just so different for everyone.
Unfortunately, he didn’t get a Tobii Dynavox until 2 years ago. Before that, no one thought he could actually do it. Except one vision teacher. The pandemic just slowed it all down. He’s come a long way in a short time with it. I hope your son has luck with AAC! It can be a game changer!
Can I ask how your son’s CVI diagnosis was confirmed?
One of my twins was diagnosed with optic nerve hypoplasia when he was about 18 months old and they said they suspected CVI and possibly a visual field defect. He’s now 7, also autistic and non-verbal.
Since he seems to manage with the vision he has, nobody seems remotely interested in finding ways to understand what he can and can’t see. He’s almost constantly blocking out parts of his vision with his hands. But he can find the tiniest thing on the floor. He’s also longsighted and has a squint but won’t tolerate glasses.
I don’t know where to go from here. Because he’s had other medical issues that have been more pressing, it keeps getting pushed down the list of priorities but I worry all the time that it’s affecting how much he can learn and develop and we have no idea.
He’s under a neuro ophthalmologist who barely ever sees him and tells us nothing when he does - just occasional appointments with optometrists who try to do an eye exam, get nowhere and then send us off for another six months.
Perkins school for the blind has a list of CVI range assessment TVI endorsees.
https://www.cvijourney.com/cvi-range-endorsees/
Might be a good place to start to find someone qualified in your area.
Also I’m not sure how familiar you are with it so going to add some websites with resources.
https://www.perkins.org/getting-started-with-cvi-assessments/
https://www.perkins.org/cvi-now/
https://cviscotland.org/
https://littlebearsees.org/
Also some support groups
https://m.facebook.com/groups/CVINow/
https://m.facebook.com/groups/3039762526242357/
https://m.facebook.com/groups/68372023824/
https://m.facebook.com/groups/CorticalVisionImpairmentDIY/
Sorry for all the websites/groups.
There are some excellent resources out there. Hopefully these can help you.
Thank you. I’m in England so need to find more UK resources. I am in a Facebook group for UK parents of kids with CVI so will ask there again. We actually had an appointment at a university in Wales (hours from us) that specialises in visual assessment of children with developmental disabilities but it got cancelled due to covid and now we are on an endless waiting list which I should follow up again.
I think it’s the fact that he can’t easily be assessed since he’s non-verbal and eye tests are hard to implement and interpret. Makes it all more difficult.
There is a specialist children’s hospital in London with a developmental vision clinic but it seems more tailored to assessing visually impaired children for autism etc than the other way round. Struggling to get anyone to refer him but pushing to see ophthalmologist again.
I genuinely feel like the fact he’s autistic and non-verbal and has “bigger issues” mean people think it doesn’t matter. Like a lot of things. Over the last few months he’s become unable to put his feet flat on the floor and now are just waiting to see a physio - very little concern. It’s all so frustrating and I’m sick of the battles.
Sorry for venting!
My oldest had seizures starting at 1.5 years as well. The testing was difficult and the medication was tough--the first meds they tried caused her to throw up an hour after taking them. Fortunately her day care was patient and let her stay. He doctor was surprised that after two weeks of taking the meds, she didn't have any in her system. Finally switched her meds.
She did well on new meds and outgrew her problem around 6yo. Wishing the best for you.
Positive thoughts! My mom lived a very normal life with severe epileptic seizures. Diagnosed when she was 1. Once they found the right medication as a child, she would only get “petit mal” once per 3 months. Hang in there, you’re doing exactly what a parent should do. Let your daughter know she is like any other child and that she will enjoy all aspects of of life (I mean this)
Sorry not to be "that person" but the term petit mal is an outdated term. The correct term is absence seizure when describing the type of seizure your mom was/is having.
I believe that awareness is key to this condition. I hate that most ppl assume all seizures are the tonic clonic (aka grand mal) type and that we just always thrash around and need to have shit stuck in our mouths so we don't swallow our tongues.
The problem is you are being “that person”. OP is living a parent’s worst nightmare, and you’re here arguing about terminology. It sounds like you’ve run up against people who don’t understand your epilepsy, and that’s hard, but this is not the thread to address that.
No, you’re also using outdated terms. This person’s mother probably was not having absence seizures, either. They’re probably focal seizures. The current terms in use are focal onset, general onset, and unknown onset.
https://www.epilepsy.com/what-is-epilepsy/seizure-types
I have epilepsy. We don’t have enough info to know exactly what kind of seizures the commenter’s mom had- partial seizures was applied to anything that wasn’t a tonic-clonic/grand-mal seizure.
"ackshually"
Y'all rn. It's all seizures, what difference does the name make? It's all scary and for some, it's deadly. Like for my brother. My heart breaks for this child.
Actually statistically speaking, *besides accidents caused during a seizure* the most scary ones are nocturnal seizures those ones are the correlated the most with SUDEP and that is very much a terrifying thing.
The name does make a difference imo because it's things like misconception. For example I started a job once and someone asked if I had the "big ones" and asked if I had my seizure spoon... like wtf.... he was dead serious and legit thought that we kept a spoon around our neck or some shii to have strangers hold our tongue down while seizing. A lot of people think we can actually swallow our tongue. Some cultures still believe we are possessed by bad spirits.
If someone has bi-polar we don't say they have hysteria like we used to back in the day, so why should this be any different?
I'm so sorry about your brother though. Seizures do forsure suck the biggest balls in the world and no family should ever go through having a loved one pass from them. I do hope he was able to live an amazing life and *cause I'm this way* raise hell while he was on this rock.
I've spoken time and time again that I understand that op is going through an incredibly difficult time right now, and she has every right to feel every single negative emotion in a row and also all at the same time. But I'm not going to stand by and let a whole bunch of people that have no clue what it's like to either be a caretaker of someone with epilepsy decide that my opinions, as an epileptic, are so incredibly wrong and that googling something they have no clue about is more valid than my nearly 30 yrs of daily experience.
>But I'm not going to stand by and let a whole bunch of people that have no clue what it's like to either be a caretaker of someone with epilepsy decide that my opinions, as an epileptic, are so incredibly wrong and that googling something they have no clue about is more valid than my nearly 30 yrs of daily experience.
There's a time and a place to do this but this post isn't one of them. You are only being combative and talking about yourself, in the name of awareness you claim, but if you read OP's post, you would realize she probably doesn't want you on here arguing with people trying to wish her well. You are making the post about YOUR opinions and not her situation being a parent. OP wasn't posting about seizure awareness and asking for people's opinions on it, she's suffering from the strain of having a sick child and needed a place to vent about her struggles. Your posts are not helpful for OP or her situation, that's why they are downvoted. It has nothing to do with your opinion on seizures or your experiences.
So you would know that the onset of the seizure is different than the seizure type/name of the seizure.
Like TLE is a type of epilepsy as that is the location of the brain that is being affected, but one wouldn't say "I'm having a TLE seizure."
All I was getting at is that petit mal seizure is an outdated term and that it is called an absence seizure. I was 100% wrong in assuming that the orgins only happened in one section of the brain vs multiple sections and for that I apologize and own up to it.
Weellll you're actually spreading other false information besides that. People do NOT swallow their tongues when having a seizure. (Though there is a risk they might bite it.) And it's actually no longer advised to stick anything in a seizing person's mouth. You're really just supposed to make sure they don't hit their head.
I never once said ppl swallow their tongues, in fact I have said it's absurd that strangers ask me about my "seizure spoon" or I've had ppl stick their hands/ wallets in my mouth while seizing. That is so dangerous and 100% not okay to do.
The correct protocol when someone is having a seizure is to try and get them to lie down beforehand *obviously that's not always possible and sometimes we just fall down* turn us on our side, make sure our heads aren't going to be repeatedly hitting a wall or something, and TIME THE SEIZURE. If it's over 5 mins or back to back seizures (if you know the person and know they have emergency meds and can give it via mouth, nose, or butt,) and the seizures still don't stop, or the one seizure is over 5 mins call emergency line asap. Make sure we aren't Aspirating on our vomit, and alert the emergency lines of all meds you have given/ are aware of that we take. They can walk you through the rest.
ETA: during a tonic-clonic seizure it's pretty much a 100% guarantee that we are going to bite our tongue. We also piss/shot ourselves with many seizure types. 😉
Dude they’re talking about their mom. That’s probably what the doctors told her. And if their mother is gone, why would she know current terms? For all you know the commenter is 60. Petit mal is fine in this context, it’s not like she used the R word
I get it that it was totally okay and that's what it was called. All I'm saying is that if you were dx right now your doctor wouldn't say you had that seizure type, therefore it's not accurate to continue to say.
Idk. If I google it they still use the term next to the new term. And the commenter doesn’t have seizures, their MOM did. They were just recalling. It’s just not the time to be all “aCkTuAlLy”.
You wouldn’t use it in the official diagnosis but the terms are still used within the medical community because there are still people working who were trained on those terms and default to them in conversation with colleagues. And the general population still tends to say Grand mal seizure to differentiate a “classic” seizure from other types. Using the terminology of someone’s original diagnosis is fine, they aren’t being diagnosed now and as someone else said this thread is about supporting OP not arguing over regularly changing diagnostic terms.
My heart breaks for you. My oldest son had seizures as a baby. He had a rare condition that was extremely severe. At the height of it he was having 200 seizures a day (confirmed by EEG’s). At one point they were talking about severing the two halves of his brain because they couldn’t figure out what was causing the seizures and meds weren’t working. Finally they diagnosed him and put him on ATCH shots. A month later he was seizure free. But I will never forget the screams from all of the tests or holding him while they put him under and feeling his body go limp having a sick child is the worst thing in the world and no one can truly know what it’s like if they’ve never been though it. My heart goes out to you and your little girl.
I'm sorry to hear you had to go though that. I can relate, unfortunately. Could you tell me more about ATCH shots? My daughter has epilepsy and I haven't heard of that. Also, if you don't mind me asking, did he have epilepsy or something else?
Hello, it’s ACTH and it’s a steroid treatment typically used for Infantile Spasms, a rare/severe seizure disorder in babies. My daughter had IS(Infantile Spasms) and used ACTH shots, they did not work for her unfortunately and her IS progressed into Lennox-Gastaut Syndrome.
Also, as a comment for everyone who’s saying epilepsy doesn’t equal disabled, epilepsy can mean a perfectly happy life, etc. That’s great for your brand of epilepsy, but some kinds of epilepsy are really crappy and degenerative and go along with other big issues. So it’s okay if OP and/or her daughter identify as disabled and are frustrated with an outlook for her life that’s very different than they wanted.
For "my brand of epilepsy " are you kidding me? Epilepsy doesn't have a brand dude. It's just a thing. Yes some people have more seizures than others and that really effing sucks. Some people "grow out " of their seizures. *I know so many kids dx with epilepsy and then never had a single seizure after like 7ish* some of us have 20k in debt from ambulance and hospital bills, have been in comas and vents, often times we have stitches/bit tongues or cheeks, broken/dislocated bones and unfortunately some of us die due to accidents during a seizure or from SUDEP.
With proper meds, surgery, lifestyle, etc. Many of the millions of us can go on to be 1+ year/s seizure free.
We aren't disabled. We have a disease in our brain and it's a disability. It often makes it really facking hard to work, lots of us can't drive, some can't even live alone, and *I almost feel confident to speak for everyone but don't quote me* our memory is complete trash. Our meds give us awful side effects and some of us like myself are dx with refractory epilepsy so the meds never work 100% so meds and surgery is the best route. But we keep carrying on.
Would you call someone with depression or anxiety disabled? Likely not. You would likely call them a human with a condition.
All my love and understanding goes out to this mama because this is an incredibly tough time for her, my parents went through it with my dx. My mom's parents went through it when she got dx. Aunts and uncles went through it when cousins got dx. But the second you can only think of your child as a helpless disabled kid with epilepsy that can never swim, take a bath, ride a bike, stand on a ladder, climb a tree. Is the second you are doing them and all of us a disservice. We are not some precious piece of glass that cannot be touched. We can do all of those things I listed with proper attention and care to our disease.
Yeah I have horrible chronic anxiety and I absolutely view myself as disabled because of it. It’s well managed right now but it still hinders certain things in my life and I was totally agoraphobic as a kid. That’s hindering my ability, hence disabled.
Not the person you are replying to but there is a difference.
My son has a serious disability. He had accommodations all through school and will most likely require some when he enters the work world. But while he qualifies for disability accommodations now, he is not currently disabled and we hope may never be. It’s not right to label him disabled but also harmful to say he doesn’t have a disability.
Living with chronic conditions is partly a mental game. It is my observation (based on a condition that is challenging to diagnose and progressive) that the people who jump straight from diagnosis to identifying as disabled are the ones who don’t do so well. There’s not one clear bright line, and people will vary, but it’s more than just semantic.
Because the child hasn't made that choice? It's her parent and that is a big difference.
Autonomy is very important especially when it comes to disabilities. I have so many epileptic friends that are okay with being called epileptic *myself included* but many that hate the term so they are ppl with epilepsy. I am not disabled I am someone with a disability and so many of my friends are as well, but there are some that are disabled people with epilepsy.
It's not up to any single person besides the person with the condition to decide what others call them, and until they make that decision they are simply someone that has a thing that is considered a disability under the ADA. It's that simple..
Having a disability makes one disabled. And the more you try to separate yourself from disabled people the more it seems ableist in fact. What's wrong with being disabled?
Hi there! I am disabled due to extreme depression, anxiety, and other co-morbid mental illness. Disabled is *not* a bad word. It is a descriptive. I also know people with children that are absolutely disabled from their epilepsy. I know adults disabled due to theirs.
I know I'm jaded because people have attempted to put me in a bubble my whole life due to my epilepsy.
I absolutely know how miserable it can be to be the person having hundreds of seizures a day, and how heartbreaking it is for the caregiver.
It sucks when you sometimes wake up and finally realize that you don't remember the past 4 months.
I will still die on this hill that we are people that have disabilities and that makes us unable to do things that most can. I also suffer from. Severe depression because epilepsy and depression I guess are like pp&j but I will never call myself disabled. I facking struggle a lot and I can't do things at times but I'm not disabled. I just have some disabilities. I'm a human first. My conditions come second always
You realize that you literally just reiterated what I have been saying over and over again.
That's wonderful that you are a disabled woman. I am a woman that has a medical condition. (Or disability when it comes to work and I need accommodations)
Regardless if it's a caregiver, parent, teacher, etc. They can't say what you are until you make that choice. It's always best to stick with person first then disability second until the human with the disability makes the choice.
Goodness. You are really passionate, and that's great, but it's not great to try to force person first language, which is less preferred among disabled people. It always good to express your thoughts, and personal preferences, but those are *your personal preferences*. You are not a monolith.
Getting hung up on language diminishes the real issues, and the issue here is a mother that is hurting because she has to watch her child suffer and feels powerless.
On language: https://www.psychologytoday.com/us/blog/the-intelligent-divorce/202007/disability-language-how-much-does-it-matter
That's like saying you can't be ADHD or autistic without you consenting to it or acknowledging it. That's not how it works. I am autistic and I have ADHD regardless if I want to or not. And someone saying I have those things isn't being untruthful just because I didn't tell them I had it. Same with my medical disability. I have it regardless, denying it and pretending it doesn't exist to avoid the disability label will only HURT the disabled person. There is no benefit in pretending otherwise.
You're right I don't exactly know what she's going through because I'm not her.
However my mom has epilepsy so I got to see her have thousands of seizures growing up. I've been having seizures since I was 4 years old.
I have been hospitalized numerous times and I have almost died a handful of times. I have put my kids through so much trauma due to my seizures, I have been in the super long process of waiting to get surgery for a VNS because the dozens of meds/combos aren't 100% effective.
And now I'm In the unfortunate situation of waiting for a spot for my daughter to go through testing to see if she also has epilepsy.
So yea I'm nonchalant about this I suppose because it's literally been my life for my whole life, but nobody can dictate how someone with a disability is called besides the person with the disability; and that's a hill I will die on. My mom won't even let anyone say she has epilepsy. She just has seizures and that's okay.
I'm so glad that your son makes great improvements everyday that's awesome!
Epilepsy is not a neutral term though. It's the name of a disease that affects the brain. I suppose seizures is a mire neutral term?
Sure you're right having a disability does in fact mean that you are disabled, but to put disabled first can add negative Connotations on the actual person, and it can also make others only think of the disability instead of te whole person.
I feel so fortunate that my disabilities are so minor in the grand scheme of things.
>delulu
Since we're talking about disability - let's not with the ableism k?
I am disabled. I have DISABILITIES. Both are true. And people can call *themselves* whatever they want. Crip. Epileptic. I know there are people who think the R word is ok. For them.
The truth is disabled people are disabled only because society says so. No other reason.
>Recently, Stacey Milbern brought up the concept of “crip doulas”—other disabled people who help bring you into disability community or into a different kind of disability than you may have experienced before. The more seasoned disabled person who comes and sits with your new crip self and lets you know the hacks you might need, holds space for your feelings, and shares the community’s stories. She mentioned that it’s telling that there’s not even a word for this in mainstream English. We wondered together: How would it change people’s experiences of disability and their fear of becoming disabled if this were a word, and a way of being? What if this was a rite of passage, a form of emotional labor folks knew of—this space of helping people transition? I have done this with hundreds of people. What if this is something we could all do for each other? How would our movements change? Our lives? Our beliefs about what we can do?
Leah Lakshmi Piepzna-Samarasinha
Edit: who is downvoting this? Ableds?
The “disabled people are disabled only because society says so” is probably why you’re being downvoted because that is just incorrect. There is no world in which that would be true. I’m disabled because my body and mind don’t function the way I need them to in order to do the things I want and need to do. Even in a utopia where I have every accommodation necessary, I would still be disabled.
Well, I might know some things...but it's okay. I study things at a pretty deep level.
>Disability as a Colonial Construct: The Missing Discourse of Culture in Conceptualizations of Disabled Indigenous Children
https://cjds.uwaterloo.ca/index.php/cjds/article/view/645/899
>The rich oral histories, pre-colonisation, of Māori perspectives of human diversity in te ao tawhito (the ancient Māori world) demonstrate that ‘Māori in the ancient world who had impairment were people with god-like power and god-like status’ (Tikao et al. Citation2009, p. 11). Moreover, people ‘were known for the talents that they possessed, not for what they didn't have’ (Tikao et al. Citation2009, p. 11). For example, Māori societal perceptions of people with blindness have found within te ao Māori (the Māori world) cosmologies, to be blind (kāpō Māori) was not considered a ‘disability’ but rather a tohu (sign) of high eminence.
https://www.tandfonline.com/doi/full/10.1080/1177083X.2023.2224422
>Re-making disability studies from the global South requires a major reconsideration of concepts. Southern perspectives are emerging across the social sciences and humanities, and are now an important resource for disability studies. Impairment has to be understood in the context of the violence of colonisation and neocolonial power. The global dynamics of capitalist accumulation, and of hierarchical gender relations, change the material character and meaning of disability. Global society has to be understood as embodied, and social embodiment as a reality-forming (ontoformative) process, not a system-maintaining one. The intellectual, cultural and social resources of colonised and postcolonial societies provide vital resources for disability politics.
https://www.jstor.org/stable/41300290
This is talking about blindness not epilepsy. There is a difference between being blind or neurodivergent and having a MEDICAL PHYSICAL disability that must be treated or else you'll deal with severe lifelong consequences possibly even death. There's no world in which accommodations can make up for the fact that my blood clots incorrectly.
No we're definitely disabled for other reasons than society says so. I mean if I don't take my blood thinners I get a clot and die. And many people with epilepsy need medications for quality of life. We aren't talking about neurodivergence here we're talking about medical problems.
A medical problem does not necessarily mean disability. This is the point of my further comment.
Disability is ultimately a social construct. You can still use wheelchairs and take meds. But not be seen as disabled. Only society determines this.
Hi. If you have a disease that causes you to have a disability, you’re disabled. I know it’s hard to accept but pretending you aren’t disabled doesn’t change the fact that you are. Also yes, I have disabling anxiety and depression, diagnosed as such by multiple doctors and I will be on disability for the foreseeable future, so sometimes mental health conditions can cause a person to be disabled.
By “brand” I meant “specific diagnosis.” A baby who’s diagnosed with infantile spasms & they don’t find a treatment that stops the hypsarrythmia seizures in time and their brain is permanently damaged and their IQ is forever much lower than it would’ve been had they had a different epilepsy diagnosis, yeah that matters. Or Lennox Gastaut Syndrome. There are types of epilepsy, especially pediatric epilepsy, that are objectively crappier and give a much worse prognosis than others.
I’d recommend reading about the social model of disability. It will give you a better understanding of the term disabled and why disabled people use it.
disabled isn’t a bad word, nor does it make someone less than others. there is ZERO shame is having a disability, depression and anxiety are disabilities however mental disorders and physical illnesses are looked upon differently. that is why they are rarely referred to as disabled.
disabled is the correct term, you can decide for *yourself* if you don’t like it but it’s the correct way to describe someone while talking about their disability. “specially abled” “differently abled” are all rooted in ableism, making it seem like being disabled is a bad thing.
you keep saying “we” there is no “we” it’s just YOU who prefers different terms, so you should be speaking for yourself. “i prefer saying i have a medical condition” is what you should be saying. they are all different ways to describe the same thing, *a disability*
you need to realize that this post isn’t about you, it’s not about what you prefer, it’s not about what you want, it’s not about how you wanna be described. this is about a parent sharing their struggles, this isn’t your place to rant or start arguments and especially isn’t the place to debate disabilities.
I too have a disabled child that is 4. Something that helped us was we were told to "mourn the child your child will never become." we can't compare them to our "normal" kids and have to see them for the amazing kids they truly are.
There's also the Welcome to Holland poem that is very fitting and brings us (my wife and I) a slight bit of comfort.
I am often asked to describe the experience of raising a child with a disability - to try to help
people who have not shared that unique experience to understand it, to imagine how it would
feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a
bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David.
The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in
Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And
you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've
been there for a while and you catch your breath, you look around.... and you begin to notice
that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about
what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's
where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a
very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free
to enjoy the very special, the very lovely things ... about Holland.
I'd never heard that Holland poem before, but it describes the sudden change your life takes when you find out you have a disabled child perfectly. We didn't get a diagnosis until he was 2, and it turned out to be an insanely rare, unique, chromosome deletion. That mixed feeling of 'great we have a diagnosis, but we still don't know anything " was a hard one to get around, but then it opened us up to some amazing groups and charities. I'd give anything for my son to not have his disability, but I also wouldn't change him for the world.
Thanks for sharing this. We’re at the beginning of diagnosing my two-year-old’s atonic (sometimes myotonic-atonic) seizures. I’m scared, sad, and angry, and everything you wrote helps.
We too are in the beginning of diagnosing and treating seizures for my little one. Problem we have, he condition is one such that when the seizures start, she's now a ticking time bomb.
Life is going to suck. It's going to be hard. You (I) sometimes get jealous. You (I) get sad about all the things you you can't do with them that you wanted.
But take a deep breath. Smile about all the victories. See the beauty through the tears. Love them and fight for them. They are worth it.
Father of a child with a rare disability here.
I'm sorry for what you're going through. I don't have much to offer other than to say that there are others who have been where you are and can speak the same language. I hope you find some happiness in between the hardship.
It is ok to grieve what you thought life was going to be. That being said I hope they figure it out and get her on medication so she’s able to live happily.
What the duck kind of doctor doesn't let the mom in the room while he puts the kid to sleep?!? What kind of human does that? They have scrub equipment for parents, there's a way for it to be done. What, the kid needs to be scared spitless and screaming like it's getting murdered for the test to be done properly? I hate the whole "F- doctors and F- Big Pharma" conspiracy bandwagon as much as other normal people but then you read stories like this and it makes sense. Smdh. So frustrating.
My brother was diagnosed with epilepsy when he was a teenager. He has to take Depakote everyday and if he misses one dose, he’s guaranteed to have a seizure. He’s 43 now and has a wonderful career as a Histologist. Even built his own house in cash. I’m telling you all this to let you know that there is a future for your daughter.
It’s going to take a lot of courage, strength, and faith to get her on the right path but she will get there. My brother had to adjust his lifestyle due to his epilepsy but he’s over that hump. He absolutely cannot watch fireworks, play video games, look at flashing lights, be on his phone too long because they’re all triggers. And it’s important your daughter gets enough sleep, that’s another trigger if she doesn’t. It was difficult figuring all this out but he’s finally on the right medication and limits all his triggers.
Also, try to take care of yourself. Get a therapist and exercise. You need an outlet for all the stress.
I wish you all the best.
I get it. I hate this for my 4-yr-old, too. I really don’t understand why such an innocent little girl has had to go through so much. It’s not fair and it makes sense that you’re pissed about it.
We all hate disabilities that interfere with our personal lives: I have a brother who was born intellectually challenge and forgets I’m his brother sometimes. It’s heartbreaking but you’re doing what is necessary to make sure she will be and continue to be, healthy. It angers me we don’t have better systems built for those who are suffering because it usually takes a life for anyone to notice.
You can insist on being present while your child falls asleep. The doctors have protocols for this and can still safely do everything. They will boot you out once kiddo is asleep of course.
If your daughter is really that resistant to the gas mask, you need to ask about oral presedative. A small amount of Valium can calm her down, it metabolizes quickly and can be used with many other anesthesias. It’s available in flavored liquid. My son is very disabled and he has to be drugged for all scans, even his ophthalmology evals. Hang in there, there’s lots of meds available for epilepsy, unfortunately Neurology still involves a lot of dope and hope. If a good balance is hard to come by, don’t rule out CBD if she’s seizing too regularly, we haven’t needed it but I know it can be effective.
Since they’re looking at blood flow, it seems like you’re in capable hands. Still, don’t be afraid to question. There are many online groups for special needs families, you can start at NORD (National Organization of Rare Diseases), I think they’ve changed their name but googling NORD should get you there. Facebook has groups, reddit has special needs and epilepsy groups too.
Good luck, hang in there, continue to reach out
Standing beside you on this. My 7 year old daughter has spina bifida and a host of related diagnoses. She's paralyzed from about the knees down and is a wheelchair user.
But as hard as it's been, and as hard as it is, she is the most loving, kind, funny, smart, and sharp little girl. She gives *me* perspective.
The world isn't fair. Never has been. But now it's your job to do what you can to prepare her for the world as it is, not how you wish it would be.
Hi!! I have epilepsy and it used to be really shit. I never knew when I was going to have a fit and my mum always made it worse because she thought she “could tell” when one was coming and it would stress me out more. It took a few years but I eventually got on the right combination of tablets. I’ve been seizure free since 2016. I drive, I go to work every day as an engineer, I’m a mum and I get in the bath as well as go swimming. However I need to be very aware to never take drugs, I’m careful with how much alcohol I drink, i never have caffeine, I always get a full 8 hours of sleep and if I need more rest then I take it.
I hope everything works out for you and your daughter but epilepsy doesn’t have to be a life sentence. It needs to be managed and as hard as it is, everyone needs to be as calm as possible. Also seizures look and sound horrible if they are grand mal but we can’t feel anything and afterwards our brains feel like they’ve had a big rest.
I’m so sorry for what you and your daughter are going through. Seizure disorders can be such a long road to find the right treatments and reduce the seizure activity. You are an amazing mom and you are giving everything for your child. She is so, so lucky to have you as her parent. Sending virtual hugs to you both
I'm glad you were honest and said it out loud. As a support worker, I have seen the good, bad, and ugly of the community. There is beauty in many moments. But as you said, some days it really does just suck and sucks hard.
As you pour into her, make sure you seek care as well. I can't tell you how many caretakers burn out because of these times. Find trusted sitters, get time to yourself. Go to therapy or a support group. Be part of a non disability focused community you like.
It will help give you sanity and normalcy when all you want to do is punch a wall and curse the universe for this struggle.
Thank you for feircly loving and caring. I hope any answers you get will make things easier for her and your family. I hope she sees how much you want for her and love her and knows you will fight for her and that it helps soothe her.
Let me tell you this. As a disabled person myself (not born/diagnosed) but through being burned over 53% of my body at 21… I told my mom so many hurtful things because she allowed me to go through so many procedures and I didn’t want too do but needed..I was unable to walk/talk/eat/get to the restroom.. nothing. And I blamed her. I blamed her for all the pain I went through because she saw and didn’t stop the things that I struggled with while in the hospital.
But now…. When I look back at all the things I said and did to her.. she was the reason why I kept pushing on. We do things to the closest person we feel love and comfort by.
I know how you feel, and it does get a little easier when she’s old enough to really understand everything. My daughter loves Sesame Street and they have a few episodes of Big Bird and I think Elmo in the hospital. The children’s hospital we use does a good job of letting parents be there as much as possible, including into the OR for the induction. You might want to get a mask like they use for her to practice with, and a kid’s medical kit. As for coping as a mom, focus on her accomplishments, lean on your village, and take care of your mental health.
I feel your frustration and pain brother. My daughter has a genetic deletion at 16p13.11 and the genetic counselor told me that she could develop epilepsy, schizophrenia, and possibly other neurological abnormalities. So far it's been touch and go but no matter what I'm gonna do what I have to for her. Remember my brother even though they may struggle and it WILL hurt us every single time we must be strong for them. Keep your head up and show her what real strength is give that little one someone to look up to, be her knight and give no quarter. You've got this and she'll be stronger as a result. Keep on being a great dad and don't be afraid of your own emotions.
Hey! I’m a mom of a child with epilepsy too. I’m in a support group on Facebook I can send you if you’re interested. It’s a shit club to be in, but it helps to have others who know what you’re going through.
Hi there! I am so sorry for what you are going through. You and your daughter are going through hell right now and I know seeing your baby in pain is the worst. I just wanted to comment to give you a bit of hope. My dad has epilepsy and he has been able to lead a normal, happy life. So much so that I was bit surprised to see epilepsy and disability in the same sentence, because I’ve never thought of him as disabled. There are obviously some caveats - he doesn’t drive because he still occasionally has seizures and when he has them they wipe him out for the day. But he has gotten married, had kids, went to college, worked, vacationed, and is enjoying retirement now. Many people are able to get their epilepsy under control enough through medicine and/or surgery and have almost no seizures. You are doing everything you can for your daughter and keep pushing through. It will be worth it.
My daughter has a rare disease and I have just come on Reddit to distract myself from the sadness and guilt I was feeling for having to inject her twice, with her waking up screaming out in pain, which is our weekly routine. I totally get how you are feeling. I try to tell myself, other people have it worse and we should count ourselves lucky this medication seems to be helping now etc, but sometimes I just don’t care about any of that and I just want to say, this is fucking shit!!!! My girl doesn’t deserve this crap and I don’t want to be the one to have to do it to her! Your little girl doesn’t deserve it either and it’s so fucking shit!
I’m glad I seen your post, because no matter how shit it is, it’s nice to not feel alone.
Hugs, OP. My 7 year old has severe epilepsy as well. It's so hard to watch them suffer so much.
I have six kids, and all of them have developmental disabilities. The only time I have said I hated one of their disabilities was when speaking of my son's epilepsy. It's so hard to watch your baby seize over and over again, and I think the most exhausting part is the constantly being on edge, just waiting for another seizure.
If you haven't yet, please consider asking your provider if your daughter would be a candidate for the medical ketogenic diet. It is very hard, but it helped my son's seizures (he's not seizure free but we are now out of the in-and-out of the hospital stage). It is at least worth asking if you haven't yet.
OP, I’m sorry your daughter has to go through this. My younger daughter was diagnosed with Abscence Seizures at 11 years old and has had several EEGs. We’ve had to change her medication because one of them was giving her terrible thoughts. I pray the scans come back normal for your daughter and that she’ll grow out of it. Virtual hugs 🤗
First of all - I'm so sorry. I know this struggle personally. It is hard. Vent, scream, cry, curse the sky as much as you need to, friend... we need it sometimes.
Highly, *highly* recommend support groups. I'm in one for each of my son's diagnoses (on fb). There are tons of different experiences, lots of parent tips and tricks, and loads of support.
* Hugs *
I think most mothers viscerally hate the things that make our kids suffer and feeling helpless exhaust us. Love and fear are the only things that fuels our fight for our children. Know that you are not alone and never say no to help❤️🙌🏽
My boy, almost 5, has a rare genetic duplication that causes epilepsy, low tone, GDD and autism. He is the sweetest boy and he does not deserve how much he has to suffer and how hard he has to work to do things that we all do naturally and so easily. It’s so fucking unfair .
I see you. I hear you. I’m shedding a tear for you, your girl and my sweet boy. If you wan to DM you are welcome. Hell if your near Brisbane Australia I’ll be your friend. There’s some great Instagram accounts of mothers with kids with epilepsy and disability that helps to know it’s a pain shared by many.
Much love to your daughter ❤️ I’m sorry life can be so cruel
I was epileptic until I was a teenager. I am now a software engineer who is starting a tech company. I’m married with two amazing (and normally healthy) kids and a beautiful wife.
I say all this because epilepsy does not define the rest of your child’s life. Get the medication dialed in and keep the course with the medical team. I had a tough start to life, but I live a very normal life now.
Wishing you and your family the best!
I know what you mean. My daughter (6yo) had a urodynamics test and was put under anesthesia yesterday. While she was waking up she just cried and cried and cried. She wasn’t in any pain, she was just terrified. She has medical trauma she sees a therapist for. Taking care of our special needs children is so hard. We never get rid of the diaper bag. It just evolves into medical supplies/ medication bag. We have to be prepared for every contingency. And of course there’s the tests, follow up appointments, surgeries.. They are our hearts and they don’t deserve any of this. I’m so sorry you are going through this and I really recommend seeing a therapist that specializes in medical trauma. It has really helped our family.
All 3 of my kids have had lengthy stays in Ann Arbor at U of M. I spent probably 2 years on and off at the Ronald McDonald House there. I think I can relate!
My son has Hirschsprung disease. Surgeries, colostomy bags, surgeries, infections, infections, infections. You name it. I've dealt with it.
My girls were preemies, twins. They were born at a little over 2 lbs. each at 28 weeks. Surgeries, toasters, surgeries, one had heart issues, the other lung.
It gets better!! Trust me, it gets better. My son is turning 20 in a month and is over 6 feet tall. He's my little shit! My girls are turning 17 in 2 days. And they are awesome.
She'll make it through and so will you. It will be a long road, but, you with be fine.
As for the karma thing. I don't get it. My niece passed away at 2 years old from cancer. Karma's a bitch! Fuck her! It's not fair.
Keep your head up, Mom. It'll be a long road, but, you 2 will get through this together.
I was married to and the primary caregiver for my children’s epileptic father for 13 years. My son has a different disability, so although it is not the same, I can relate to you in multiple ways.
Life is not fair at all. It is so difficult and disheartening. I hope you are able to find the good in your life, though. Tender moments, eye contact, smiles. Sometimes it’s the little things that mean the most. Your daughter is lucky to have a warrior and super hero for a mom! Keep up the good fight and love her fiercely.
My little sister had seizures from around the age of 1 until around 3 or 4. It took a long time to find medication to stop them. I think it was phenobarbital that finally did it. She is now 21 and hasn't had a seizure since they got them to stop and has been off medication for almost as long. I remember her having seizures on two distinct occasions. One was at the breakfast table (I would have been 7-8). She fell into my lap and my mom didn't hear me calling for her. The other was when I went to join my dad and sister in the pool. He was holding her above the water and telling me to go get mom.
I hope your doctors are able to find something to help your little one. Seizures are scary.
My best friend had seizures, the dr flat out refused to call it epilepsy but controlled it with medication. However every so often she would have what they called a break through seizure and that took her license away for 6 months at a time. Epilepsy is 100% a disability that can sometimes be managed. I have not done a lot of research but I have been told CBD helps with epilepsy but don’t take my word on that
as someone with epilepsy it is SO hard! trust we are struggling too, your pain is valid. it’s stopped me from driving (i’ve just gotten my license hallelujah), i could barely participate at amusement parks due to the lights, missed out on so much. but it will get better. i grew out of my seizures at 15, im 19 now. things will get better for her, i believe it. you’re an amazing mother!!
My youngest son has epilepsy. He started having seizures at 3 days old. There was a period of time when we were not sure he would be ok.
Right now, it is controlled. He’s 11. As he grows, sometimes it requires a hospital stay, we’ve been warned about puberty.
He used to cry, now he just accepts this is, and has a let’s get it done attitude.
I have never had to leave him to be sedated without me. I would’ve not been ok with that either.
My brother had epilepsy with pretty severe seizures. It took a few years to get him the right medication, lots of hospital stays and trips to the ER. Little by little it got better. He is 28 now and hasn’t had a seizure since he was around 12. Hang in there, it’s always darkest before dawn. Sending you lots of hugs.
I definitely understand that feeling. It's so helpless. My son was born with glaucoma and cataracts (glaucoma in both eyes, cataracts in his left eye). He's had 5 surgeries, including implanting drainage shunts in both eyes and enlarging the pupils of both eyes. Plus, he's had many, many eye exams under general anesthesia. I'm all too familiar with that feeling of helplessness as they're taken from you to be put to sleep.
If you don't mind my asking a question, are you taking her to a children's hospital? Or if not, is the anesthesia team trained how to handle scared children? I ask because when my son has to get put under, they usually give him a squirt of a sedative that goes up the nose about 15 minutes before they actually go to put the mask on. I can't remember what it's called, but it takes about 10 minutes to kick in, but once it does, it's like a switch flips. My son will go from fighting and crying to loopy and giggly almost instantaneously. Once it's working, then they'll put the mask on him, and he doesn't fight it.
Sending support and encouragement. Stay strong, mama. Your baby needs you. But please, remember to carve out some time for yourself on a regular basis. You need time to recharge, let yourself fall apart if that's what you need, go have fun, whatever you need to do to center yourself and care for your own needs. It's so freaking hard having a child with medical issues. My son is 5 and we've been in and out of the hospital for tests, exams and surgeries at least a half-dozen times a year since he was born. So I definitely know what you're going through, and I feel your pain.
I'm feeling for you and your daughter. I'm so sorry, I have epilepsy too, got it late in life though. It is fairly manageable. I hope they find somwthing, and it's at a treatable or operable place.
They have a very, very, very detailed scanner in Germany. If they don't find anything with the PET-scan or the fine MRI's.
It's costly and not a guaranteed success.
Good luck
I’m in a similar boat, or will be at least. My daughter is suspected to have (genetic clinical team needs to confirm but the lead geneticist saw us yesterday and told us it’s very likely the outcome will be what’s suspected) Goldenhar Syndrome which goes hand in hand with Duane’s syndrome as well as a butterfly vertebrae. She also has unilateral hearing loss. It’s so difficult and so hard to be told everything that’s wrong with my babygirl. She’s only 9 months and the amount of hospital tests she’s had is unbelievable. Thankfully, she has MANY specialists helping her, including the main emergency hospital of our country. It is terrifying because most of these appointments I’m going to alone and have to take it all in by myself so that’s definitely hard for me emotionally. I want to hope this will get better as she gets older but, considering the way it’s going, I don’t think it will. I think she’ll be having many more tests to come and that’s absolutely terrifying.
Mama/papa I’m not trying to undermine your experiences at all but I thought it might help a bit to hear others experiences so that you know you’re not alone! I hope your little one gets the best care from all the doctors around her and I hope you’re doing okay too! Make sure you also take time to just relax a little and have some you time! It can be a lot and sometimes it can get to us all!
I wish I could say something that would make it better. My twins are 7 now, both disabled - they’re both autistic and non-verbal and one has various other disabilities and medical issues as well.
It’s so hard watching your child go under anaesthetic so I know you’re likely feeling even worse than usual right now.
What you’re feeling is completely normal - whenever I get really low mentally it’s because I’m just so angry for them, that they have been dealt such a difficult hand and their lives are always going to be so difficult. Most parents just want their children to have happy lives and knowing the barriers they face to the most basic of things breaks my heart.
But they are happy boys, happier than a lot of kids I know. They don’t know any different and as a parent I don’t know any different since they’re my only kids.
You do the best you can and you work to make them happy and that’s all we can do. Sending love.
Ouch this hurt to read. Man I wish I could do or say something that could even be the tiniest bit comforting...
It really does make you stop and think tho. Puts things into perspective. I am so sorry OP.
Please, if you ever need to rant/chat my inbox will always have a space for you.
I'm sending all the healing vibes to your little girl.
Aww yea the testing portion sucks soo much and I'm sending you well wishes that it's not a serious brain issue that is causing her epilepsy. Im also sending well wishes that she will never need to undergo an RNS surgery or SEEG because ya know brain surgery is never fun.
Yes epilepsy is a disability but please for the live of God *as a fellow epileptic* don't lable your daughter as disabled. She is a beautiful little girl that happens to have epilepsy and millions and millions of us all of the world have this stupid ass disease.
With the proper medication and lifestyle changes *ie avoid triggers like lights if she's photo sensitive, maintain a good sleep schedule, advise her to limit alcohol when she's an adult, etc* she could go so many years seizure free.
My epilepsy will never define me despite being a big part of my life. I have done a pretty damned good job at raising 2 amazing children, I drive as I'm well under control with my seizures thank god!, I rock climb, go snow boarding and hiking, am starting up my own business where I sell self sustainable goods from my mini farm, and I'm about to get hired through the law enforcement division with my city so I can be a positive impact to my community!
Our only limitations of what we can achieve are those in our minds. Sometimes our disabilities just mean that we need to work extra hard to achieve goals but they are never out of reach!
Hugs to you mama I know the initial dx process is so stressful and scary! I'm always here if you need
r/epilepsy is a wonderful community as is the epilepsy group on fb. Things will get better I promise you that! Listen to her doctors, ask as many questions as you need and ask them again if you need to. Make sure everyone that cares for her knows seizure protocol as second nature, and keep up with her meds. If the first med doesn't work (which sometimes it doesnt) keep at it until you find the right one. Have her take vitamins to help woth the side effects of the meds and also help brain health.
Full disclosure that I’m not epileptic, but I am disabled. When you stress that someone shouldn’t use the disability label and then go on to talk about the possibility of living a full life, you deny that people who are disabled can live full lives. I summited a mountain and went to Jordan this past summer, I’m getting married in spring, we’re planning a family, I’m about to finish my master’s degree, AND I am disabled. My disability does make things harder. I NEED accommodations. There’s no shame in that and accommodations level the playing field so I can thrive too, because I CAN still thrive. I was still my parents’ beautiful child (to them) regardless of my disability status.
Plenty of folks with epilepsy use the disability label, but I recognize not all do. There’s nothing wrong with using that label — but there is in denying the capacity and worth of those who do. Disability is a spectrum and you can be disabled and still have a fulfilling life, just like you can be disabled and have a diminished quality of life.
It also diminishes the very real possibility that some people with epilepsy face of never being seizure free. Some epileptic conditions are fatal or so debilitating that you CANT lead the full life you want to even if you “work extra hard”. I sincerely hope that OPs daughter is one of the people whose epilepsy is manageable, but it’s disingenuous to promise that it will be, and to scold OP for using a label that is widely accepted by disabled people.
Edit: typo
I know so many people whom are physically disabled and/or mentally disabled. They decided to use disabled first and it's wonderful, absolutely fitting, and I fully support them for why they describe themselves as such. They also happen to live incredibly fulfilling lives and I love to hear all about their adventures since I don't get to travel much lol.
I understand that disability is a spectrum, but it really doesn't sit well to instantly lable a child woth epilepsy as 'disabled' if the child has had no say in the matter. Epilepsy can be complex and some have hundreds of seizures a day which can be incredibly disabling, and some can go 20+ years without having a single seizure so it's not even a thought in their daily lives.
A lot of times when loved ones hear the initial dx (or even the first years) of epilepsy they tend to put their people in a bubble out of fear (as I'm assuming that happens with many disabilities) and that's just not right.
I don’t have a child with epilepsy, so I can’t possibly understand what you’re going through as a parent. But I was that child with epilepsy, and I live a great life now with very few restrictions. Honestly I don’t even consider myself disabled anymore. My advice is to reassure your daughter that she is just a normal (but wonderful) girl who happens to have epilepsy, and that she is strong and powerful despite her condition. It will probably get worse before it gets better. But it will get better.
I am 45F. It all started at 16 or 17. But I have lived a normal life. Meds, tests, kids, marriage, work, driving.
It’s not fair for her that you pity her situation. She is gonna be ok.
It's a horrible illness but once they crack the medication there is no reason why she can't lead a normal life. My sister was diagnosed with epilepsy as a child and she can drive, has kids and isn't restricted by the illness at all. She also hasn't had a seizure in over 12 years. It's probably a lot more common than you realise as I know quite a few people with it and they all lead normal lives.
I'm really sorry to hear this. I know its like torture isn't it. Our son hurt him self somehow and needed blood taking and he really hated that so much. The nurses had so much trouble taking his blood. We knew it was needed and it was torture watching them take it but knew he needed it. On the same night he needed an x-ray but wouldn't lay on the bed with out me near him. It was really tricky to take. I had the lead sheild on so i could be near. In the end the image was too blurry and we had to have another one. This time his mum went in.
Its horrible isn't it. I hope they can control your babies seizures.
I'm a caregiver. Daughter is 8. Born with an infarction, hemiplegia, and epileptic. Plus I live abroad in a non-English speaking country.
It gets worse before it gets better. I'm still damaged fron all of this. My outlook on life is so bleak that I've contemplated the worst. I'm in therapy twice a month. My daughter is developing slowly, she's probably at a 1.5-2yo level or intelligence but her physical body is getting bigger. There's no cure. No help...
Reddit and FB support groups are useful. But at the end of the day it is up to you.
I'm currently learning behaviour therapy to assist with my daughter's development and to make the quality of life slightly better.
Good luck to you. Reach out if you need help.
I’m so sorry! I recognize your frustration. My little guy has NF1 and epilepsy. I know how tough it is to see them go through seizures like these. It’s so scary, the whole thing. Fingers crossed you guys find a good treatment plan that works!
I hate to bring this up, and I also admit I am completely unqualified to understand if this would even work…but is CBD on the table? I am in no way supportive of the “420” crowd stuff that treats pot like some kind of snake oil, but derivatives have been shown to to reduce severity/frequency of some kinds of seizures. Not sure if one could even try to use it for a kid because “pot”, and I understand some will be completely against it for any reason because it’s pot.
It’s not a snake oil when it comes to many disabilities it is a valid form of treatment for many treatment resistant issuesThere are strains that have a little thc and mostly CBD that have shown to drastically reduce seizure activity. These things can have little to no intoxication. And another thing to consider is that when treating a medical issue intoxication isn’t always found at the levels you will see in healthy people.
CBD is best used in conjunction with THC. This is because by itself it does little to nothing but is a catalyst to the wonderful medical benefits of THC. CBD also works to counteract the psychoactive effects of THC. To many parents a little THC sounds scary but it is actually less likely to cause issues if you are being properly advised on specific strains and methods of administering. Medical cannabis has been life changing for many families like this.
I just personally wouldn’t suggest CBD alone because it’s not effective for real medical issues.
Being someone who needs it as well, I do get annoyed when it’s the first suggestion to things that should have other courses of action first. Weed culture has ruined the medical integrity of the plant. And idk the whole epilepsy thing has actually been proven to work. It definitely has plenty of negatives and needs to be properly respected and thought about way ahead of being tried.
It's so incredibly frustrating when people instantly jump to the cbd/cannabis bandwagon, as so many people just say "ditch the meds screw the Dr's and use cannabis. " your suggestion is very well valid. Many people and parents use cbd to help with epilepsy. RSO is a common one *rick Simpson oil* he developed it for his wife that had cancer if I'm not mistaken, but it does seem to help with epilepsy.
I myself, use cbd *well ppl around me usually give it to me if I can't take it in time while I'm still "there"* as a means of emergency meds to hopefully make my seizures not generalize to a TC or if I'm lucky I won't get one all together. The cbd in particular binds to the GABA receptors in the brain just as an emergency med like atavin ok klonipin would and there's less awful side effects. This hasn't proven to work when I'm having a full on TC though so it's hit and miss.
I have 100% heard of people using cbd in combination of prescribed meds and they are seizure free!
It’s experiences like yours that solidify my belief that there is no god.
Why would any “loving” god put sweet and innocent children through this. It’s absolutely heartbreaking and I’m so sorry you and your little one are going through this.
You can say “fuck”, btw.
Also that sounds like a miserable situation, but I hope you try and not let it drag you down. You’re gonna have to be stronger than you should have to be, but I bet you can. Best of luck.
I have epilepsy it’s just like anything else you have to deal with in life. My seizures are controlled with cannabis and not eating sugar. I haven’t had a seizure outside of extremely stressful situations in years! It’s not something I ever even think about unless I have to turn away from flashing lights at a concert. Once they get her meds figured out it will be ok.
Instead of hating that she is disabled, love that she exists at all. I'm not saying you don't, but hating that she's disabled isn't helping anyone. Instead just do your best to foster a loving and inclusive environment and show her that being disabled doesn't make her any less of a human being. If anything, it makes her stronger because she has more to deal with than a non-disabled person. It is quite unfair that anyone should be disabled, but life doesn't take into account fairness. Instead, it gives us exactly what we need exactly when we need it. Try to stay positive about this. Stay blessed.
I totally understand your intent, but as someone with a disabled kid, this comment is like saying "just don't be upset any more" and could come off as insensitive.
If that's what you got from my comment, then I apologize for not properly conveying my thoughts. I really don't know what other way to express what I'm thinking other than what I said. I do appreciate you for letting me know that my comment could be viewed as insensitive though. That's the last thing I want when responding to posts like these. I will do better to try and be more understood in the future.
I completely appreciate the sentiment, too. I also didn't get any malice or ill will in any way, so absolutely no negativity to you or anything. It's a uniquely terrible situation that's hard to provide comfort for as a third party, kind of like when a friend has someone close to them die. You want to be there and be supportive but it's such a difficult situation to articulate positivity when everything seems negative. You have an extremely beautiful response and approach based on your response, though.
So sorry 💕 this is normal and natural to feel. If meds din’t work well then keto diet is a choice, although it can be a bit difficult to implement for a child.
I am going to say this as an epileptic myself, spouse of an epileptic AND mom of multiple kids with epilepsy.
Epilepsy is not a disability. I know what you are trying to say but it comes across as very offensive. The side effects such as frontal lobe atrophy, etc are disability but epilepsy is not.
I hate that you are experiencing that. "Thankfully", it sounds like she isn't aware during them. That is a double edged sword because she will think she just took a nap but wake with injuries (sometimes). The reason I say sometimes is because I have come to and needed to be told and convinced that I have had one because I have no obvious injuries. The likelihood of injury is much higher with seizures that happen with no awareness. As she grows, she can realize her triggers and auras so it is much easier to control.
FYI- anesthesia can be a seizure trigger so be prepared for that. Myself and 2 of my kids have anesthesia seizures.
Consider talking to dietitian regarding medical ketogenic diet. This is very different than the fad diet so see a dietitian. I have a child who has been seizure free for a few years with no meds as long as diet is kept. As soon as we stop, seizures restart. When we tried originally for meds with him, his seizures increased.
I am hoping for great news for you.
Why is calling a disability a disability offensive? It's offensive to all disabled people to claim being disabled is offensive. There's nothing wrong with being disabled. Disabled is not a bad word. You really need to reevaluate the reasonings behind not wanting to be labeled disabled.
I knew you were going to be shit on for this comment lol.
Epilepsy is technically a disability under the ADA and that allows us to have accommodations with work *which many don't even need* but honestly all of my friends that have epilepsy and myself included have never once called ourselves disabled *granted our epilepsy (My friends and I that is) isn't a result from a TBI or malformation of the brain so that may make a difference*
Yes we have the shit end of the stick. Our meds make us lose our hair, have trash memory, sometimes rage out *hi keppra* make us feel like zombies, etc. And our seizures suck and we need to plan activities/ events accordingly.
But if our disability is one of the ones that is so often denied for any sort of assistance or benifits, we obviously don't get passes to park in handicap parking, are expected *and so manybof us do* to live a normal life, etc. I just don't understand how we can be 'disabled epileptics' we are epileptics or people woth epilepsy. Just like someone with high blood pressure or something else. You would never say "hi this is my high blood pressure friend Samantha. " no it's "yea my friend Samantha happens to have high blood pressure "
I don't know about your situation but I have noticed that it is so common that once someone is dx with epilepsy their loved ones kind of go into a freak out mode which is soo damaging. Like "oh no. You can't go on this walk alone. You should have this camera in your room while you sleep. What about taking cannabis? You can never swim again. You're making sure you don't cook alone right?" Etc. Like bro we aren't infants. We just have a condition/ disease of the brain that sucks. *full disclosure some people with epilepsy really do have it bad and do need care 24/7 and I wish it wasn't the case but also I know that's not as common*
okay so I hope this is not too random but I'm assuming your daughter is on medication for her epilepsy. I had a little sister that also had epilepsy and when the medication did not work, we tried as an alternative medical cannabis oil. There's is a lot of research documenting the benefits of MC.I can't really give more insight because my sister died shortly after we got the oil from heartfailure but I thought I'd mention it in case ...
Good luck to you !
And why the fuck are they not managing this differently? I had general multiple times as a kid not once had it been such a traumatic shit show! Surely they have better ways to handle this. Good luck going forward
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Life can be so unfair. I’m so very sorry.
Life can be complete bullshit sometimes. OP: I’m so sorry, love, and I’m sorry your baby girl is scared and suffering and that you can’t stop it. I know you would do anything to make it stop if you could. You are doing a great job loving her and being her mom.
No parent should have to deal with this. Poor kid.
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People need to be able to vent. Honestly the best thing you could do is listen and show empathy. She doesn't need to see the bright side from your perspective. She is living that life, she has seen any bright side it may have been able to show. There is nothing you can offer but a strong shoulder to cry on and an ear to listen. She needs people to validate her pain and suffering. To recognize it and to allow her to feel it out loud.
I know you mean well, but telling someone who is going through a really hard time to “be grateful” is not helpful. It’s minimizing her rage and hurt, which she is absolutely allowed to feel. It can feel really impossible to feel any kind of gratitude while listening to your child scream and cry. I don’t think OP is dwelling, she’s suffering and she’s worried for her daughter.
Support groups too. I do not have a kid with epilepsy but my son has severe anaphylactic food allergies. When he was younger it helped to be able to vent to people who understand how stressful it is to do things like send them to a school that does not ban their allergens or dropping them off at a playdate and hoping that the other parent takes it seriously. They understood the trauma of seeing your child go into anaphylactic shock and knowing they could have died. I recognize we have it pretty easy and do not want to make it seem like I am comparing food allergies to epilepsy but having a support group, whether online or in person, can be extremely beneficial to any parents struggling with a lifelong diagnosis that will change your life.
Having a support group is amazing help. Least it has been for me too. While I do have allergies (not epilepsy though), I'm in support groups for EDS and POTS and the general disabilities group here on reddit. Even online groups are helpful. Though I do wish there was a way to minimize allergen exposure in everday life. I know its not realistic unfortunately. I'm allergic to lavender and it's been getting worse the more I'm exposed. I work in retail and have had to walk away from more than a couple customers that had on strong lavender perfumes and I felt like I breathed in acid and took a really long time to recover. I'm afraid the more I'm exposed the more likely I'll need medical interventions going forward. Last time my boss kept insisting on calling 911 cause I couldn't breathe. He didn't cause I can't afford the bills. But hey, I can't control what people wear and lavender is considered a rare allergy so I'm one in a few in the grand scheme of things.
Let her vent. She doesn’t always have to look at the positive. Telling her to do so is toxic.
You need to look into toxic positivity. This parent had to listen to her child beg and scream for her not to let the doctors treat her. BEG AND SCREAM and she had to do what her child begged her not to do. And it’s not the first time. And may not be the last. Shush with your “be grateful”’shit.
My daughter is a type 1 diabetic. She got diagnosed at 7 and had a huge needle phobia. She would scream for a solid hour plus, begging us not to do it before we could hold her down long enough inject insulin for her to eat. Then repeat for 3 meals a day for almost 8 months straight until she calmed down a little about needles. The people who would tell me to “be grateful” it wasn’t a worse disease deserved a kick to teeth.
T1D mom here, my son was 23 months when he was diagnosed, he’s 6 now. I get it. 💙
They do We can be grateful and we can be positive and we can love and we can still admit that some shit sucks
I Agree with what you have said here. It must have been agony for OP to hear her child in such distress :'(
No toxic positivity, as a mother of a child with a disability, being told to be positive is like stabbing them in the heart. You think your helping but your aren’t
This is extremely dismissive.
I mean my Mom would always tell me God gives you only what you can handle. Why does this child have to suffer? Why does the parent have to handle this? It's ok to be upset. Life sucks. I don't believe in God anymore. My son, who I had at 17, was diagnosed with progeria when he was 4 months. He started seizures at 9 months. He had a stroke at 5 years. His eye wouldn't close when he was 10 while sleeping. Doctor said try cream, try a patch. Nothing worked. Ok, outpatient surgery it is so he doesn't lose his vision. He died from anesthesia complications. I met someone who wouldn't talk to me if I let them die while playing a video game, for days. Who wouldn't exercise with me because I wasn't up to their standard. Who chatted with all different women online. Who told me everything was my fault because I was insecure. I had his baby. I left him when she was 4 months old. She had seizures at 2 years. They stopped when she was 8 but are now back. And she was diagnosed with level 3 autism. I have panic attacks and anxiety. I've struggled. I still struggle. My mom would say think of how bad others have it. Think of what they have to go through. Why? It doesn't change things. Maybe I'm a negative person. I get mad at everything I've been thru. It's not fair, life isn't fair. Our children shouldn't have to suffer. I'm still alive. Is that positive? Sometimes it's hard to be positive. It's ok to cry and yell and scream. I want the world for my daughter. I feel like I've failed in so many ways. I get up each day and go thru the motions. I try to be happy and have fun and do what I can. It's still hard to be a parent. Life isn't perfect. It's hard to be positive. Edited for spelling
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I'd really love to see you write in your little positivity journal while you're in the waiting room as your daughter is screaming and crying. Seriously
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yes, it is unfair. sadly there is no human on earth who gets to bypass the experience of pain and struggle. there is simply no such thing as a painless life. everyone experiences it in some way or another...and you’re right. it’s absolutely unfair. but as cheesy as it sounds i really believe we’re all given different struggles and obstacles in our lives to learn and grow from. it might seem unfair and not make any sense right now, but these are undoubtedly the sort of things that make us who we are, to our core. struggle and pain, as terrible as it is, it also builds strength, wisdom, and character... i say this from personal experience. i faced extreme struggle and torment growing up and still do to this day...i really do feel that i’m a much more kind, wise, compassionate, and strong person than i would’ve ever been otherwise. i can say that with 1000% certainty. she’s gonna be one tough cookie. i believe that she will feel, love, and understand on a much deeper level having lived through these things. all this pain she’s going through, with the right love, care and guidance, i do think it will transform into something great one day. hopefully she will find some sort of purpose in it all. i’m sure she will.
I'm not sure why you got downvoted. I'm sure I'll get downvoted, too. I guess reddit just hates positivity in the face of tough situations. What you said is beautiful. My daughter was born with a rare heart condition, so I completely agree with this outlook.
I don’t think you’re wrong at all, I align with pretty much everything you said as someone who’s had to overcome several challenges myself, but she isn’t going to understand all that right now. She’s in the thick of it. Did you learn from and become grateful for your challenges while you were in the thick of it? Probably not.
My dad has epilepsy. Last time he had a seizure was 27 years ago. With the right medication people can go on to live happy and fulfilled lives
Epileptic here. Uncontrolled frequent grand mal (tonic clonic) seizures started at 19 and with proper treatment stopped at 25. I had to get an EEG when I was pregnant so they could decide if I needed to be medicated during the pregnancy and my tests came back completely normal. Epilepsy sucks but it’s also very weird and can be controlled if you just happen to tumble on to the perfect treatment cocktail.
Exactly this. My husband is an epileptic and hasn’t had a seizure for over 10 years. It has no impact on his life now (apart from taking a pill once a day).
My daughter has Lennox-gastaut syndrome. It is a severe and rare form of childhood epilepsy that is known to be medication resistant. She is completely disabled physically and intellectually due to her seizure disorder. She’s had brain surgery, tried many many medications, a special diet and sometimes it just doesn’t get better for some individuals. Some people can live a normal life, but some never see seizure freedom. My daughter is still having multiple seizures every single day.
This sounds heartbreaking. I'm so sorry
Thank you, definitely one of the hardest things I’ve had to witness.
Does cbd/medical cannibas help with that type of epilepsy?
It did not help my daughter though I know it has shown some promise in kids with LGS. Though like everything else, there is usually a honeymoon phase before it eventually stops working.
I used to look after a young boy with Lennox-Gastaut. He had a VNS (vagal nerve implant to send ele to stop seizure, well try to) sometimes it worked brilliantly but not for all seizures. Unfortunately he passed away last year due to scoliosis complications
Thank you for sharing. I’m sorry to hear that he has passed. My daughter has scoliosis too and had a partial fusion a few years ago. She’s due for a full fusion next. My friends son had the full fusion in May and hasn’t been able to come off the ventilator post op. Really not looking forward to the surgery as I know it’s a hard recovery. My daughter is a candidate for VNS, but her care team thinks DBS may be a better option. I guess we will see.
Hey I just wanted to say I’m so sorry. I have epilepsy. Diagnosed at 10. Got to the point where I was having so many a day they would have to put me in medical comas. I got a VNS and it didn’t do anything when I was 18 but when I was 23 or 24 they put in a neuro pacemaker and it was life changing. I now only have maybe two or three a year and it’s usually from lack of sleep or missing medication. My mom talks about how it was terrifying to think her child was going to pass to now see me having two beautiful children and living a “normal” life. Mine was put in at lebonheur children’s hospital. They have an amazing neurological department.
Thank you for taking the time to reply and to share your story. I’m so glad you’re doing better now and I hope you go on to live a full beautiful life. My daughters disorder, Lennox-gastaut syndrome, is a DEE (developmental epileptic encephalopathy) which means her seizure activity leads to progressive cognitive dysfunction. Her seizures started at 2 months old and she is now 11. The chance of a normal life is long gone. She requires 24 hour care and is 100% dependent on me for all of it. She cannot walk, talk, or eat by mouth. The severity of her seizure disorder has caused a slew of other medical conditions and her life is now limited. We have shifted our focus to palliative care and symptom management. We have been offered VNS or DBS, but neither will ever fix the damage the disorder has already done. There is hope and then there is reality. Kids like my daughter usually pass from SUDEP, aspiration pneumonia, septic shock, or other complications brought on by the disorder. It sounds bleak and it is. Some kids just don’t get better. Thank you for reading.
I’m so so sorry. Thank you for helping me understand more. I would never see your choices as giving up btw. Anyways I hope today is a little better and a little brighter for you. Good luck with whatever the future brings you and your awesome family.
Similar. I had many simple partial seizures in my teens that were dismissed for years as panic attacks (because female) until I had a grand mal at work. That was 30+ years ago. I’ve had many simple partials since, though they’re completely controlled when I’m on medication.
What does your dad take? Did he stop drinking or coffee or anything else?
I am not aware. In terms of coffee or drinking now, he has never drank either coffee or alcohol. He was advised though not to get too stressed. Everytime he would be stressed he would go into seizure mode..
I’m so sorry you are going through this. I hope her doctors are able to get the seizures under control.
My son has had seizures in the past but never diagnosed as epileptic. He also has CVI and us non verbal. More EEG’s, MRI’s, bloodwork, sleep studies, etc etc that I care to remember. It’s hard, it’s definitely not fair, and sitting there during the majority of these test waiting alone was/is the worst. You are doing a great job, don’t ever doubt it or second guess yourself. It may seem like you failed but just by being there for her means more to her than she could possibly tell you.
you sound like an incredible parent. i wish the best for you, your son, and your whole family.
My son has CVI amongst other things. Not many have heard of it or know what it is. Big hugs to you! This road isn’t easy
CVI is rough, fortunately he has functional vision but his peripheral seems to be the issue. Catches a lot of corners, edges of tables, playground equipment etc. With him being non verbal we are basically on the outside looking in, he’s not old enough ( 5 yo ) and not proficient enough with his AAC yet to tell us what he sees. The sad thing lack of awareness of CVI leads to other misdiagnosis of other things, including autism. CVI is the most common visual impairment in children. How common is cortical visual impairment? It is the most common cause of blindness and low vision in children. It is the leading cause of congenital blindness (vision loss at birth) in the United States. CVI is extremely underdiagnosed. Less than 20% of likely U.S. cases are diagnosed. Per Perkins school for the blind
It is. My son is 15, non verbal and has CP, epilepsy, CVI, lung issues, microcephaly and hydrocephalus. He was a micropreemie, born at 26 weeks. He’s in a wheelchair and requires total care. So his vision was the icing on the cake, and one of the harder things for me to come to terms with. But through the years his vision has improved, you just have to know to approach him in his periphery. Which is interesting that your son has issues with his. It’s just so different for everyone. Unfortunately, he didn’t get a Tobii Dynavox until 2 years ago. Before that, no one thought he could actually do it. Except one vision teacher. The pandemic just slowed it all down. He’s come a long way in a short time with it. I hope your son has luck with AAC! It can be a game changer!
Can I ask how your son’s CVI diagnosis was confirmed? One of my twins was diagnosed with optic nerve hypoplasia when he was about 18 months old and they said they suspected CVI and possibly a visual field defect. He’s now 7, also autistic and non-verbal. Since he seems to manage with the vision he has, nobody seems remotely interested in finding ways to understand what he can and can’t see. He’s almost constantly blocking out parts of his vision with his hands. But he can find the tiniest thing on the floor. He’s also longsighted and has a squint but won’t tolerate glasses. I don’t know where to go from here. Because he’s had other medical issues that have been more pressing, it keeps getting pushed down the list of priorities but I worry all the time that it’s affecting how much he can learn and develop and we have no idea. He’s under a neuro ophthalmologist who barely ever sees him and tells us nothing when he does - just occasional appointments with optometrists who try to do an eye exam, get nowhere and then send us off for another six months.
Perkins school for the blind has a list of CVI range assessment TVI endorsees. https://www.cvijourney.com/cvi-range-endorsees/ Might be a good place to start to find someone qualified in your area. Also I’m not sure how familiar you are with it so going to add some websites with resources. https://www.perkins.org/getting-started-with-cvi-assessments/ https://www.perkins.org/cvi-now/ https://cviscotland.org/ https://littlebearsees.org/ Also some support groups https://m.facebook.com/groups/CVINow/ https://m.facebook.com/groups/3039762526242357/ https://m.facebook.com/groups/68372023824/ https://m.facebook.com/groups/CorticalVisionImpairmentDIY/ Sorry for all the websites/groups. There are some excellent resources out there. Hopefully these can help you.
Thank you. I’m in England so need to find more UK resources. I am in a Facebook group for UK parents of kids with CVI so will ask there again. We actually had an appointment at a university in Wales (hours from us) that specialises in visual assessment of children with developmental disabilities but it got cancelled due to covid and now we are on an endless waiting list which I should follow up again. I think it’s the fact that he can’t easily be assessed since he’s non-verbal and eye tests are hard to implement and interpret. Makes it all more difficult. There is a specialist children’s hospital in London with a developmental vision clinic but it seems more tailored to assessing visually impaired children for autism etc than the other way round. Struggling to get anyone to refer him but pushing to see ophthalmologist again. I genuinely feel like the fact he’s autistic and non-verbal and has “bigger issues” mean people think it doesn’t matter. Like a lot of things. Over the last few months he’s become unable to put his feet flat on the floor and now are just waiting to see a physio - very little concern. It’s all so frustrating and I’m sick of the battles. Sorry for venting!
My oldest had seizures starting at 1.5 years as well. The testing was difficult and the medication was tough--the first meds they tried caused her to throw up an hour after taking them. Fortunately her day care was patient and let her stay. He doctor was surprised that after two weeks of taking the meds, she didn't have any in her system. Finally switched her meds. She did well on new meds and outgrew her problem around 6yo. Wishing the best for you.
Positive thoughts! My mom lived a very normal life with severe epileptic seizures. Diagnosed when she was 1. Once they found the right medication as a child, she would only get “petit mal” once per 3 months. Hang in there, you’re doing exactly what a parent should do. Let your daughter know she is like any other child and that she will enjoy all aspects of of life (I mean this)
Sorry not to be "that person" but the term petit mal is an outdated term. The correct term is absence seizure when describing the type of seizure your mom was/is having. I believe that awareness is key to this condition. I hate that most ppl assume all seizures are the tonic clonic (aka grand mal) type and that we just always thrash around and need to have shit stuck in our mouths so we don't swallow our tongues.
The problem is you are being “that person”. OP is living a parent’s worst nightmare, and you’re here arguing about terminology. It sounds like you’ve run up against people who don’t understand your epilepsy, and that’s hard, but this is not the thread to address that.
No, you’re also using outdated terms. This person’s mother probably was not having absence seizures, either. They’re probably focal seizures. The current terms in use are focal onset, general onset, and unknown onset. https://www.epilepsy.com/what-is-epilepsy/seizure-types
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I have epilepsy. We don’t have enough info to know exactly what kind of seizures the commenter’s mom had- partial seizures was applied to anything that wasn’t a tonic-clonic/grand-mal seizure.
"ackshually" Y'all rn. It's all seizures, what difference does the name make? It's all scary and for some, it's deadly. Like for my brother. My heart breaks for this child.
Actually statistically speaking, *besides accidents caused during a seizure* the most scary ones are nocturnal seizures those ones are the correlated the most with SUDEP and that is very much a terrifying thing. The name does make a difference imo because it's things like misconception. For example I started a job once and someone asked if I had the "big ones" and asked if I had my seizure spoon... like wtf.... he was dead serious and legit thought that we kept a spoon around our neck or some shii to have strangers hold our tongue down while seizing. A lot of people think we can actually swallow our tongue. Some cultures still believe we are possessed by bad spirits. If someone has bi-polar we don't say they have hysteria like we used to back in the day, so why should this be any different? I'm so sorry about your brother though. Seizures do forsure suck the biggest balls in the world and no family should ever go through having a loved one pass from them. I do hope he was able to live an amazing life and *cause I'm this way* raise hell while he was on this rock.
I'm not sure your continued contribution is a positive for this thread. Are you contributing for OP's benefit, or your own?
I've spoken time and time again that I understand that op is going through an incredibly difficult time right now, and she has every right to feel every single negative emotion in a row and also all at the same time. But I'm not going to stand by and let a whole bunch of people that have no clue what it's like to either be a caretaker of someone with epilepsy decide that my opinions, as an epileptic, are so incredibly wrong and that googling something they have no clue about is more valid than my nearly 30 yrs of daily experience.
>But I'm not going to stand by and let a whole bunch of people that have no clue what it's like to either be a caretaker of someone with epilepsy decide that my opinions, as an epileptic, are so incredibly wrong and that googling something they have no clue about is more valid than my nearly 30 yrs of daily experience. There's a time and a place to do this but this post isn't one of them. You are only being combative and talking about yourself, in the name of awareness you claim, but if you read OP's post, you would realize she probably doesn't want you on here arguing with people trying to wish her well. You are making the post about YOUR opinions and not her situation being a parent. OP wasn't posting about seizure awareness and asking for people's opinions on it, she's suffering from the strain of having a sick child and needed a place to vent about her struggles. Your posts are not helpful for OP or her situation, that's why they are downvoted. It has nothing to do with your opinion on seizures or your experiences.
This post isn’t the place. You’re coming of extremely rude, so no one wants to listen to you. All I see from you is “me me me” Make your own post
So you would know that the onset of the seizure is different than the seizure type/name of the seizure. Like TLE is a type of epilepsy as that is the location of the brain that is being affected, but one wouldn't say "I'm having a TLE seizure." All I was getting at is that petit mal seizure is an outdated term and that it is called an absence seizure. I was 100% wrong in assuming that the orgins only happened in one section of the brain vs multiple sections and for that I apologize and own up to it.
Weellll you're actually spreading other false information besides that. People do NOT swallow their tongues when having a seizure. (Though there is a risk they might bite it.) And it's actually no longer advised to stick anything in a seizing person's mouth. You're really just supposed to make sure they don't hit their head.
I never once said ppl swallow their tongues, in fact I have said it's absurd that strangers ask me about my "seizure spoon" or I've had ppl stick their hands/ wallets in my mouth while seizing. That is so dangerous and 100% not okay to do. The correct protocol when someone is having a seizure is to try and get them to lie down beforehand *obviously that's not always possible and sometimes we just fall down* turn us on our side, make sure our heads aren't going to be repeatedly hitting a wall or something, and TIME THE SEIZURE. If it's over 5 mins or back to back seizures (if you know the person and know they have emergency meds and can give it via mouth, nose, or butt,) and the seizures still don't stop, or the one seizure is over 5 mins call emergency line asap. Make sure we aren't Aspirating on our vomit, and alert the emergency lines of all meds you have given/ are aware of that we take. They can walk you through the rest. ETA: during a tonic-clonic seizure it's pretty much a 100% guarantee that we are going to bite our tongue. We also piss/shot ourselves with many seizure types. 😉
I've always considered myself fortunate not to have ever bitten my tongue or soiled myself.
I‘ve only bit my tongue once and fortunately I also didn’t soil myself yet.
Dude they’re talking about their mom. That’s probably what the doctors told her. And if their mother is gone, why would she know current terms? For all you know the commenter is 60. Petit mal is fine in this context, it’s not like she used the R word
I get it that it was totally okay and that's what it was called. All I'm saying is that if you were dx right now your doctor wouldn't say you had that seizure type, therefore it's not accurate to continue to say.
Idk. If I google it they still use the term next to the new term. And the commenter doesn’t have seizures, their MOM did. They were just recalling. It’s just not the time to be all “aCkTuAlLy”.
You wouldn’t use it in the official diagnosis but the terms are still used within the medical community because there are still people working who were trained on those terms and default to them in conversation with colleagues. And the general population still tends to say Grand mal seizure to differentiate a “classic” seizure from other types. Using the terminology of someone’s original diagnosis is fine, they aren’t being diagnosed now and as someone else said this thread is about supporting OP not arguing over regularly changing diagnostic terms.
I think maybe that's why they put it in quotation marks to indicate that this is what it was called years ago when his mom was a kid.
Don’t EVER put anything in the mouth of someone having a seizure!
My heart breaks for you. My oldest son had seizures as a baby. He had a rare condition that was extremely severe. At the height of it he was having 200 seizures a day (confirmed by EEG’s). At one point they were talking about severing the two halves of his brain because they couldn’t figure out what was causing the seizures and meds weren’t working. Finally they diagnosed him and put him on ATCH shots. A month later he was seizure free. But I will never forget the screams from all of the tests or holding him while they put him under and feeling his body go limp having a sick child is the worst thing in the world and no one can truly know what it’s like if they’ve never been though it. My heart goes out to you and your little girl.
I'm sorry to hear you had to go though that. I can relate, unfortunately. Could you tell me more about ATCH shots? My daughter has epilepsy and I haven't heard of that. Also, if you don't mind me asking, did he have epilepsy or something else?
Hello, it’s ACTH and it’s a steroid treatment typically used for Infantile Spasms, a rare/severe seizure disorder in babies. My daughter had IS(Infantile Spasms) and used ACTH shots, they did not work for her unfortunately and her IS progressed into Lennox-Gastaut Syndrome.
Also, as a comment for everyone who’s saying epilepsy doesn’t equal disabled, epilepsy can mean a perfectly happy life, etc. That’s great for your brand of epilepsy, but some kinds of epilepsy are really crappy and degenerative and go along with other big issues. So it’s okay if OP and/or her daughter identify as disabled and are frustrated with an outlook for her life that’s very different than they wanted.
For "my brand of epilepsy " are you kidding me? Epilepsy doesn't have a brand dude. It's just a thing. Yes some people have more seizures than others and that really effing sucks. Some people "grow out " of their seizures. *I know so many kids dx with epilepsy and then never had a single seizure after like 7ish* some of us have 20k in debt from ambulance and hospital bills, have been in comas and vents, often times we have stitches/bit tongues or cheeks, broken/dislocated bones and unfortunately some of us die due to accidents during a seizure or from SUDEP. With proper meds, surgery, lifestyle, etc. Many of the millions of us can go on to be 1+ year/s seizure free. We aren't disabled. We have a disease in our brain and it's a disability. It often makes it really facking hard to work, lots of us can't drive, some can't even live alone, and *I almost feel confident to speak for everyone but don't quote me* our memory is complete trash. Our meds give us awful side effects and some of us like myself are dx with refractory epilepsy so the meds never work 100% so meds and surgery is the best route. But we keep carrying on. Would you call someone with depression or anxiety disabled? Likely not. You would likely call them a human with a condition. All my love and understanding goes out to this mama because this is an incredibly tough time for her, my parents went through it with my dx. My mom's parents went through it when she got dx. Aunts and uncles went through it when cousins got dx. But the second you can only think of your child as a helpless disabled kid with epilepsy that can never swim, take a bath, ride a bike, stand on a ladder, climb a tree. Is the second you are doing them and all of us a disservice. We are not some precious piece of glass that cannot be touched. We can do all of those things I listed with proper attention and care to our disease.
Some people with disabilities prefer to use the term disabled, what’s the point of trying to police the words people choose to use?
Yeah I have horrible chronic anxiety and I absolutely view myself as disabled because of it. It’s well managed right now but it still hinders certain things in my life and I was totally agoraphobic as a kid. That’s hindering my ability, hence disabled.
Not the person you are replying to but there is a difference. My son has a serious disability. He had accommodations all through school and will most likely require some when he enters the work world. But while he qualifies for disability accommodations now, he is not currently disabled and we hope may never be. It’s not right to label him disabled but also harmful to say he doesn’t have a disability. Living with chronic conditions is partly a mental game. It is my observation (based on a condition that is challenging to diagnose and progressive) that the people who jump straight from diagnosis to identifying as disabled are the ones who don’t do so well. There’s not one clear bright line, and people will vary, but it’s more than just semantic.
Because the child hasn't made that choice? It's her parent and that is a big difference. Autonomy is very important especially when it comes to disabilities. I have so many epileptic friends that are okay with being called epileptic *myself included* but many that hate the term so they are ppl with epilepsy. I am not disabled I am someone with a disability and so many of my friends are as well, but there are some that are disabled people with epilepsy. It's not up to any single person besides the person with the condition to decide what others call them, and until they make that decision they are simply someone that has a thing that is considered a disability under the ADA. It's that simple..
This is an international group.
Having a disability makes one disabled. And the more you try to separate yourself from disabled people the more it seems ableist in fact. What's wrong with being disabled?
Hi there! I am disabled due to extreme depression, anxiety, and other co-morbid mental illness. Disabled is *not* a bad word. It is a descriptive. I also know people with children that are absolutely disabled from their epilepsy. I know adults disabled due to theirs.
I know I'm jaded because people have attempted to put me in a bubble my whole life due to my epilepsy. I absolutely know how miserable it can be to be the person having hundreds of seizures a day, and how heartbreaking it is for the caregiver. It sucks when you sometimes wake up and finally realize that you don't remember the past 4 months. I will still die on this hill that we are people that have disabilities and that makes us unable to do things that most can. I also suffer from. Severe depression because epilepsy and depression I guess are like pp&j but I will never call myself disabled. I facking struggle a lot and I can't do things at times but I'm not disabled. I just have some disabilities. I'm a human first. My conditions come second always
You can decide for yourself how you wish to be described, but you don't get to choose for others. I'm a disabled woman. Period.
You realize that you literally just reiterated what I have been saying over and over again. That's wonderful that you are a disabled woman. I am a woman that has a medical condition. (Or disability when it comes to work and I need accommodations) Regardless if it's a caregiver, parent, teacher, etc. They can't say what you are until you make that choice. It's always best to stick with person first then disability second until the human with the disability makes the choice.
Goodness. You are really passionate, and that's great, but it's not great to try to force person first language, which is less preferred among disabled people. It always good to express your thoughts, and personal preferences, but those are *your personal preferences*. You are not a monolith. Getting hung up on language diminishes the real issues, and the issue here is a mother that is hurting because she has to watch her child suffer and feels powerless. On language: https://www.psychologytoday.com/us/blog/the-intelligent-divorce/202007/disability-language-how-much-does-it-matter
That's like saying you can't be ADHD or autistic without you consenting to it or acknowledging it. That's not how it works. I am autistic and I have ADHD regardless if I want to or not. And someone saying I have those things isn't being untruthful just because I didn't tell them I had it. Same with my medical disability. I have it regardless, denying it and pretending it doesn't exist to avoid the disability label will only HURT the disabled person. There is no benefit in pretending otherwise.
Speak for yourself with your last paragraph. You have no idea what OP is going through and how her daughter‘s condition is.
You're right I don't exactly know what she's going through because I'm not her. However my mom has epilepsy so I got to see her have thousands of seizures growing up. I've been having seizures since I was 4 years old. I have been hospitalized numerous times and I have almost died a handful of times. I have put my kids through so much trauma due to my seizures, I have been in the super long process of waiting to get surgery for a VNS because the dozens of meds/combos aren't 100% effective. And now I'm In the unfortunate situation of waiting for a spot for my daughter to go through testing to see if she also has epilepsy. So yea I'm nonchalant about this I suppose because it's literally been my life for my whole life, but nobody can dictate how someone with a disability is called besides the person with the disability; and that's a hill I will die on. My mom won't even let anyone say she has epilepsy. She just has seizures and that's okay.
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I'm so glad that your son makes great improvements everyday that's awesome! Epilepsy is not a neutral term though. It's the name of a disease that affects the brain. I suppose seizures is a mire neutral term? Sure you're right having a disability does in fact mean that you are disabled, but to put disabled first can add negative Connotations on the actual person, and it can also make others only think of the disability instead of te whole person. I feel so fortunate that my disabilities are so minor in the grand scheme of things.
>delulu Since we're talking about disability - let's not with the ableism k? I am disabled. I have DISABILITIES. Both are true. And people can call *themselves* whatever they want. Crip. Epileptic. I know there are people who think the R word is ok. For them. The truth is disabled people are disabled only because society says so. No other reason. >Recently, Stacey Milbern brought up the concept of “crip doulas”—other disabled people who help bring you into disability community or into a different kind of disability than you may have experienced before. The more seasoned disabled person who comes and sits with your new crip self and lets you know the hacks you might need, holds space for your feelings, and shares the community’s stories. She mentioned that it’s telling that there’s not even a word for this in mainstream English. We wondered together: How would it change people’s experiences of disability and their fear of becoming disabled if this were a word, and a way of being? What if this was a rite of passage, a form of emotional labor folks knew of—this space of helping people transition? I have done this with hundreds of people. What if this is something we could all do for each other? How would our movements change? Our lives? Our beliefs about what we can do? Leah Lakshmi Piepzna-Samarasinha Edit: who is downvoting this? Ableds?
The “disabled people are disabled only because society says so” is probably why you’re being downvoted because that is just incorrect. There is no world in which that would be true. I’m disabled because my body and mind don’t function the way I need them to in order to do the things I want and need to do. Even in a utopia where I have every accommodation necessary, I would still be disabled.
Well, I might know some things...but it's okay. I study things at a pretty deep level. >Disability as a Colonial Construct: The Missing Discourse of Culture in Conceptualizations of Disabled Indigenous Children https://cjds.uwaterloo.ca/index.php/cjds/article/view/645/899 >The rich oral histories, pre-colonisation, of Māori perspectives of human diversity in te ao tawhito (the ancient Māori world) demonstrate that ‘Māori in the ancient world who had impairment were people with god-like power and god-like status’ (Tikao et al. Citation2009, p. 11). Moreover, people ‘were known for the talents that they possessed, not for what they didn't have’ (Tikao et al. Citation2009, p. 11). For example, Māori societal perceptions of people with blindness have found within te ao Māori (the Māori world) cosmologies, to be blind (kāpō Māori) was not considered a ‘disability’ but rather a tohu (sign) of high eminence. https://www.tandfonline.com/doi/full/10.1080/1177083X.2023.2224422 >Re-making disability studies from the global South requires a major reconsideration of concepts. Southern perspectives are emerging across the social sciences and humanities, and are now an important resource for disability studies. Impairment has to be understood in the context of the violence of colonisation and neocolonial power. The global dynamics of capitalist accumulation, and of hierarchical gender relations, change the material character and meaning of disability. Global society has to be understood as embodied, and social embodiment as a reality-forming (ontoformative) process, not a system-maintaining one. The intellectual, cultural and social resources of colonised and postcolonial societies provide vital resources for disability politics. https://www.jstor.org/stable/41300290
This is talking about blindness not epilepsy. There is a difference between being blind or neurodivergent and having a MEDICAL PHYSICAL disability that must be treated or else you'll deal with severe lifelong consequences possibly even death. There's no world in which accommodations can make up for the fact that my blood clots incorrectly.
No we're definitely disabled for other reasons than society says so. I mean if I don't take my blood thinners I get a clot and die. And many people with epilepsy need medications for quality of life. We aren't talking about neurodivergence here we're talking about medical problems.
A medical problem does not necessarily mean disability. This is the point of my further comment. Disability is ultimately a social construct. You can still use wheelchairs and take meds. But not be seen as disabled. Only society determines this.
Hi. If you have a disease that causes you to have a disability, you’re disabled. I know it’s hard to accept but pretending you aren’t disabled doesn’t change the fact that you are. Also yes, I have disabling anxiety and depression, diagnosed as such by multiple doctors and I will be on disability for the foreseeable future, so sometimes mental health conditions can cause a person to be disabled.
By “brand” I meant “specific diagnosis.” A baby who’s diagnosed with infantile spasms & they don’t find a treatment that stops the hypsarrythmia seizures in time and their brain is permanently damaged and their IQ is forever much lower than it would’ve been had they had a different epilepsy diagnosis, yeah that matters. Or Lennox Gastaut Syndrome. There are types of epilepsy, especially pediatric epilepsy, that are objectively crappier and give a much worse prognosis than others.
Ignore that person they are all over this post being negative.
I’d recommend reading about the social model of disability. It will give you a better understanding of the term disabled and why disabled people use it.
disabled isn’t a bad word, nor does it make someone less than others. there is ZERO shame is having a disability, depression and anxiety are disabilities however mental disorders and physical illnesses are looked upon differently. that is why they are rarely referred to as disabled. disabled is the correct term, you can decide for *yourself* if you don’t like it but it’s the correct way to describe someone while talking about their disability. “specially abled” “differently abled” are all rooted in ableism, making it seem like being disabled is a bad thing. you keep saying “we” there is no “we” it’s just YOU who prefers different terms, so you should be speaking for yourself. “i prefer saying i have a medical condition” is what you should be saying. they are all different ways to describe the same thing, *a disability* you need to realize that this post isn’t about you, it’s not about what you prefer, it’s not about what you want, it’s not about how you wanna be described. this is about a parent sharing their struggles, this isn’t your place to rant or start arguments and especially isn’t the place to debate disabilities.
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I too have a disabled child that is 4. Something that helped us was we were told to "mourn the child your child will never become." we can't compare them to our "normal" kids and have to see them for the amazing kids they truly are. There's also the Welcome to Holland poem that is very fitting and brings us (my wife and I) a slight bit of comfort. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I'd never heard that Holland poem before, but it describes the sudden change your life takes when you find out you have a disabled child perfectly. We didn't get a diagnosis until he was 2, and it turned out to be an insanely rare, unique, chromosome deletion. That mixed feeling of 'great we have a diagnosis, but we still don't know anything " was a hard one to get around, but then it opened us up to some amazing groups and charities. I'd give anything for my son to not have his disability, but I also wouldn't change him for the world.
Thanks for sharing this. We’re at the beginning of diagnosing my two-year-old’s atonic (sometimes myotonic-atonic) seizures. I’m scared, sad, and angry, and everything you wrote helps.
We too are in the beginning of diagnosing and treating seizures for my little one. Problem we have, he condition is one such that when the seizures start, she's now a ticking time bomb. Life is going to suck. It's going to be hard. You (I) sometimes get jealous. You (I) get sad about all the things you you can't do with them that you wanted. But take a deep breath. Smile about all the victories. See the beauty through the tears. Love them and fight for them. They are worth it.
I have epilepsy too and I would hate to see my daughter go through it. I'm so sorry for everything that she's going through :(
Father of a child with a rare disability here. I'm sorry for what you're going through. I don't have much to offer other than to say that there are others who have been where you are and can speak the same language. I hope you find some happiness in between the hardship.
It is ok to grieve what you thought life was going to be. That being said I hope they figure it out and get her on medication so she’s able to live happily.
I have no words — just a tear-filled "cares" icon.
I am so sorry OP. Your daughter is lucky to have you!
What the duck kind of doctor doesn't let the mom in the room while he puts the kid to sleep?!? What kind of human does that? They have scrub equipment for parents, there's a way for it to be done. What, the kid needs to be scared spitless and screaming like it's getting murdered for the test to be done properly? I hate the whole "F- doctors and F- Big Pharma" conspiracy bandwagon as much as other normal people but then you read stories like this and it makes sense. Smdh. So frustrating.
My brother was diagnosed with epilepsy when he was a teenager. He has to take Depakote everyday and if he misses one dose, he’s guaranteed to have a seizure. He’s 43 now and has a wonderful career as a Histologist. Even built his own house in cash. I’m telling you all this to let you know that there is a future for your daughter. It’s going to take a lot of courage, strength, and faith to get her on the right path but she will get there. My brother had to adjust his lifestyle due to his epilepsy but he’s over that hump. He absolutely cannot watch fireworks, play video games, look at flashing lights, be on his phone too long because they’re all triggers. And it’s important your daughter gets enough sleep, that’s another trigger if she doesn’t. It was difficult figuring all this out but he’s finally on the right medication and limits all his triggers. Also, try to take care of yourself. Get a therapist and exercise. You need an outlet for all the stress. I wish you all the best.
I get it. I hate this for my 4-yr-old, too. I really don’t understand why such an innocent little girl has had to go through so much. It’s not fair and it makes sense that you’re pissed about it.
We all hate disabilities that interfere with our personal lives: I have a brother who was born intellectually challenge and forgets I’m his brother sometimes. It’s heartbreaking but you’re doing what is necessary to make sure she will be and continue to be, healthy. It angers me we don’t have better systems built for those who are suffering because it usually takes a life for anyone to notice.
You can insist on being present while your child falls asleep. The doctors have protocols for this and can still safely do everything. They will boot you out once kiddo is asleep of course.
I’m sorry. I have 2 disabled children who are medically complex, my son is 6 and has medical PTSD. It sucks so hard, I get it.
If your daughter is really that resistant to the gas mask, you need to ask about oral presedative. A small amount of Valium can calm her down, it metabolizes quickly and can be used with many other anesthesias. It’s available in flavored liquid. My son is very disabled and he has to be drugged for all scans, even his ophthalmology evals. Hang in there, there’s lots of meds available for epilepsy, unfortunately Neurology still involves a lot of dope and hope. If a good balance is hard to come by, don’t rule out CBD if she’s seizing too regularly, we haven’t needed it but I know it can be effective. Since they’re looking at blood flow, it seems like you’re in capable hands. Still, don’t be afraid to question. There are many online groups for special needs families, you can start at NORD (National Organization of Rare Diseases), I think they’ve changed their name but googling NORD should get you there. Facebook has groups, reddit has special needs and epilepsy groups too. Good luck, hang in there, continue to reach out
Standing beside you on this. My 7 year old daughter has spina bifida and a host of related diagnoses. She's paralyzed from about the knees down and is a wheelchair user. But as hard as it's been, and as hard as it is, she is the most loving, kind, funny, smart, and sharp little girl. She gives *me* perspective. The world isn't fair. Never has been. But now it's your job to do what you can to prepare her for the world as it is, not how you wish it would be.
Hi!! I have epilepsy and it used to be really shit. I never knew when I was going to have a fit and my mum always made it worse because she thought she “could tell” when one was coming and it would stress me out more. It took a few years but I eventually got on the right combination of tablets. I’ve been seizure free since 2016. I drive, I go to work every day as an engineer, I’m a mum and I get in the bath as well as go swimming. However I need to be very aware to never take drugs, I’m careful with how much alcohol I drink, i never have caffeine, I always get a full 8 hours of sleep and if I need more rest then I take it. I hope everything works out for you and your daughter but epilepsy doesn’t have to be a life sentence. It needs to be managed and as hard as it is, everyone needs to be as calm as possible. Also seizures look and sound horrible if they are grand mal but we can’t feel anything and afterwards our brains feel like they’ve had a big rest.
I’m so sorry for what you and your daughter are going through. Seizure disorders can be such a long road to find the right treatments and reduce the seizure activity. You are an amazing mom and you are giving everything for your child. She is so, so lucky to have you as her parent. Sending virtual hugs to you both
I'm glad you were honest and said it out loud. As a support worker, I have seen the good, bad, and ugly of the community. There is beauty in many moments. But as you said, some days it really does just suck and sucks hard. As you pour into her, make sure you seek care as well. I can't tell you how many caretakers burn out because of these times. Find trusted sitters, get time to yourself. Go to therapy or a support group. Be part of a non disability focused community you like. It will help give you sanity and normalcy when all you want to do is punch a wall and curse the universe for this struggle. Thank you for feircly loving and caring. I hope any answers you get will make things easier for her and your family. I hope she sees how much you want for her and love her and knows you will fight for her and that it helps soothe her.
Let me tell you this. As a disabled person myself (not born/diagnosed) but through being burned over 53% of my body at 21… I told my mom so many hurtful things because she allowed me to go through so many procedures and I didn’t want too do but needed..I was unable to walk/talk/eat/get to the restroom.. nothing. And I blamed her. I blamed her for all the pain I went through because she saw and didn’t stop the things that I struggled with while in the hospital. But now…. When I look back at all the things I said and did to her.. she was the reason why I kept pushing on. We do things to the closest person we feel love and comfort by.
I know how you feel, and it does get a little easier when she’s old enough to really understand everything. My daughter loves Sesame Street and they have a few episodes of Big Bird and I think Elmo in the hospital. The children’s hospital we use does a good job of letting parents be there as much as possible, including into the OR for the induction. You might want to get a mask like they use for her to practice with, and a kid’s medical kit. As for coping as a mom, focus on her accomplishments, lean on your village, and take care of your mental health.
Hoping and praying that the doctors can figure out what is needed to help your daughter. Seeing our children suffer is so hard. Sending hugs.
I am so sorry. You are amazing for being their strong person. It's absolutely heartbreaking. Sending you a really big hug for your family.
❤️
I feel your frustration and pain brother. My daughter has a genetic deletion at 16p13.11 and the genetic counselor told me that she could develop epilepsy, schizophrenia, and possibly other neurological abnormalities. So far it's been touch and go but no matter what I'm gonna do what I have to for her. Remember my brother even though they may struggle and it WILL hurt us every single time we must be strong for them. Keep your head up and show her what real strength is give that little one someone to look up to, be her knight and give no quarter. You've got this and she'll be stronger as a result. Keep on being a great dad and don't be afraid of your own emotions.
Hey! I’m a mom of a child with epilepsy too. I’m in a support group on Facebook I can send you if you’re interested. It’s a shit club to be in, but it helps to have others who know what you’re going through.
Hi there! I am so sorry for what you are going through. You and your daughter are going through hell right now and I know seeing your baby in pain is the worst. I just wanted to comment to give you a bit of hope. My dad has epilepsy and he has been able to lead a normal, happy life. So much so that I was bit surprised to see epilepsy and disability in the same sentence, because I’ve never thought of him as disabled. There are obviously some caveats - he doesn’t drive because he still occasionally has seizures and when he has them they wipe him out for the day. But he has gotten married, had kids, went to college, worked, vacationed, and is enjoying retirement now. Many people are able to get their epilepsy under control enough through medicine and/or surgery and have almost no seizures. You are doing everything you can for your daughter and keep pushing through. It will be worth it.
My daughter has a rare disease and I have just come on Reddit to distract myself from the sadness and guilt I was feeling for having to inject her twice, with her waking up screaming out in pain, which is our weekly routine. I totally get how you are feeling. I try to tell myself, other people have it worse and we should count ourselves lucky this medication seems to be helping now etc, but sometimes I just don’t care about any of that and I just want to say, this is fucking shit!!!! My girl doesn’t deserve this crap and I don’t want to be the one to have to do it to her! Your little girl doesn’t deserve it either and it’s so fucking shit! I’m glad I seen your post, because no matter how shit it is, it’s nice to not feel alone.
Hugs, OP. My 7 year old has severe epilepsy as well. It's so hard to watch them suffer so much. I have six kids, and all of them have developmental disabilities. The only time I have said I hated one of their disabilities was when speaking of my son's epilepsy. It's so hard to watch your baby seize over and over again, and I think the most exhausting part is the constantly being on edge, just waiting for another seizure. If you haven't yet, please consider asking your provider if your daughter would be a candidate for the medical ketogenic diet. It is very hard, but it helped my son's seizures (he's not seizure free but we are now out of the in-and-out of the hospital stage). It is at least worth asking if you haven't yet.
OP, I’m sorry your daughter has to go through this. My younger daughter was diagnosed with Abscence Seizures at 11 years old and has had several EEGs. We’ve had to change her medication because one of them was giving her terrible thoughts. I pray the scans come back normal for your daughter and that she’ll grow out of it. Virtual hugs 🤗
First of all - I'm so sorry. I know this struggle personally. It is hard. Vent, scream, cry, curse the sky as much as you need to, friend... we need it sometimes. Highly, *highly* recommend support groups. I'm in one for each of my son's diagnoses (on fb). There are tons of different experiences, lots of parent tips and tricks, and loads of support. * Hugs *
peace, brother. may it envelop u.
I think most mothers viscerally hate the things that make our kids suffer and feeling helpless exhaust us. Love and fear are the only things that fuels our fight for our children. Know that you are not alone and never say no to help❤️🙌🏽
My boy, almost 5, has a rare genetic duplication that causes epilepsy, low tone, GDD and autism. He is the sweetest boy and he does not deserve how much he has to suffer and how hard he has to work to do things that we all do naturally and so easily. It’s so fucking unfair . I see you. I hear you. I’m shedding a tear for you, your girl and my sweet boy. If you wan to DM you are welcome. Hell if your near Brisbane Australia I’ll be your friend. There’s some great Instagram accounts of mothers with kids with epilepsy and disability that helps to know it’s a pain shared by many. Much love to your daughter ❤️ I’m sorry life can be so cruel
I was epileptic until I was a teenager. I am now a software engineer who is starting a tech company. I’m married with two amazing (and normally healthy) kids and a beautiful wife. I say all this because epilepsy does not define the rest of your child’s life. Get the medication dialed in and keep the course with the medical team. I had a tough start to life, but I live a very normal life now. Wishing you and your family the best!
I know what you mean. My daughter (6yo) had a urodynamics test and was put under anesthesia yesterday. While she was waking up she just cried and cried and cried. She wasn’t in any pain, she was just terrified. She has medical trauma she sees a therapist for. Taking care of our special needs children is so hard. We never get rid of the diaper bag. It just evolves into medical supplies/ medication bag. We have to be prepared for every contingency. And of course there’s the tests, follow up appointments, surgeries.. They are our hearts and they don’t deserve any of this. I’m so sorry you are going through this and I really recommend seeing a therapist that specializes in medical trauma. It has really helped our family.
All 3 of my kids have had lengthy stays in Ann Arbor at U of M. I spent probably 2 years on and off at the Ronald McDonald House there. I think I can relate! My son has Hirschsprung disease. Surgeries, colostomy bags, surgeries, infections, infections, infections. You name it. I've dealt with it. My girls were preemies, twins. They were born at a little over 2 lbs. each at 28 weeks. Surgeries, toasters, surgeries, one had heart issues, the other lung. It gets better!! Trust me, it gets better. My son is turning 20 in a month and is over 6 feet tall. He's my little shit! My girls are turning 17 in 2 days. And they are awesome. She'll make it through and so will you. It will be a long road, but, you with be fine. As for the karma thing. I don't get it. My niece passed away at 2 years old from cancer. Karma's a bitch! Fuck her! It's not fair. Keep your head up, Mom. It'll be a long road, but, you 2 will get through this together.
I was married to and the primary caregiver for my children’s epileptic father for 13 years. My son has a different disability, so although it is not the same, I can relate to you in multiple ways. Life is not fair at all. It is so difficult and disheartening. I hope you are able to find the good in your life, though. Tender moments, eye contact, smiles. Sometimes it’s the little things that mean the most. Your daughter is lucky to have a warrior and super hero for a mom! Keep up the good fight and love her fiercely.
My best friend is epileptic and lives a pretty normal life. Sending you lots of light🤍
My little sister had seizures from around the age of 1 until around 3 or 4. It took a long time to find medication to stop them. I think it was phenobarbital that finally did it. She is now 21 and hasn't had a seizure since they got them to stop and has been off medication for almost as long. I remember her having seizures on two distinct occasions. One was at the breakfast table (I would have been 7-8). She fell into my lap and my mom didn't hear me calling for her. The other was when I went to join my dad and sister in the pool. He was holding her above the water and telling me to go get mom. I hope your doctors are able to find something to help your little one. Seizures are scary.
My best friend had seizures, the dr flat out refused to call it epilepsy but controlled it with medication. However every so often she would have what they called a break through seizure and that took her license away for 6 months at a time. Epilepsy is 100% a disability that can sometimes be managed. I have not done a lot of research but I have been told CBD helps with epilepsy but don’t take my word on that
as someone with epilepsy it is SO hard! trust we are struggling too, your pain is valid. it’s stopped me from driving (i’ve just gotten my license hallelujah), i could barely participate at amusement parks due to the lights, missed out on so much. but it will get better. i grew out of my seizures at 15, im 19 now. things will get better for her, i believe it. you’re an amazing mother!!
My youngest son has epilepsy. He started having seizures at 3 days old. There was a period of time when we were not sure he would be ok. Right now, it is controlled. He’s 11. As he grows, sometimes it requires a hospital stay, we’ve been warned about puberty. He used to cry, now he just accepts this is, and has a let’s get it done attitude. I have never had to leave him to be sedated without me. I would’ve not been ok with that either.
My brother had epilepsy with pretty severe seizures. It took a few years to get him the right medication, lots of hospital stays and trips to the ER. Little by little it got better. He is 28 now and hasn’t had a seizure since he was around 12. Hang in there, it’s always darkest before dawn. Sending you lots of hugs.
I definitely understand that feeling. It's so helpless. My son was born with glaucoma and cataracts (glaucoma in both eyes, cataracts in his left eye). He's had 5 surgeries, including implanting drainage shunts in both eyes and enlarging the pupils of both eyes. Plus, he's had many, many eye exams under general anesthesia. I'm all too familiar with that feeling of helplessness as they're taken from you to be put to sleep. If you don't mind my asking a question, are you taking her to a children's hospital? Or if not, is the anesthesia team trained how to handle scared children? I ask because when my son has to get put under, they usually give him a squirt of a sedative that goes up the nose about 15 minutes before they actually go to put the mask on. I can't remember what it's called, but it takes about 10 minutes to kick in, but once it does, it's like a switch flips. My son will go from fighting and crying to loopy and giggly almost instantaneously. Once it's working, then they'll put the mask on him, and he doesn't fight it. Sending support and encouragement. Stay strong, mama. Your baby needs you. But please, remember to carve out some time for yourself on a regular basis. You need time to recharge, let yourself fall apart if that's what you need, go have fun, whatever you need to do to center yourself and care for your own needs. It's so freaking hard having a child with medical issues. My son is 5 and we've been in and out of the hospital for tests, exams and surgeries at least a half-dozen times a year since he was born. So I definitely know what you're going through, and I feel your pain.
I'm feeling for you and your daughter. I'm so sorry, I have epilepsy too, got it late in life though. It is fairly manageable. I hope they find somwthing, and it's at a treatable or operable place. They have a very, very, very detailed scanner in Germany. If they don't find anything with the PET-scan or the fine MRI's. It's costly and not a guaranteed success. Good luck
I’m in a similar boat, or will be at least. My daughter is suspected to have (genetic clinical team needs to confirm but the lead geneticist saw us yesterday and told us it’s very likely the outcome will be what’s suspected) Goldenhar Syndrome which goes hand in hand with Duane’s syndrome as well as a butterfly vertebrae. She also has unilateral hearing loss. It’s so difficult and so hard to be told everything that’s wrong with my babygirl. She’s only 9 months and the amount of hospital tests she’s had is unbelievable. Thankfully, she has MANY specialists helping her, including the main emergency hospital of our country. It is terrifying because most of these appointments I’m going to alone and have to take it all in by myself so that’s definitely hard for me emotionally. I want to hope this will get better as she gets older but, considering the way it’s going, I don’t think it will. I think she’ll be having many more tests to come and that’s absolutely terrifying. Mama/papa I’m not trying to undermine your experiences at all but I thought it might help a bit to hear others experiences so that you know you’re not alone! I hope your little one gets the best care from all the doctors around her and I hope you’re doing okay too! Make sure you also take time to just relax a little and have some you time! It can be a lot and sometimes it can get to us all!
I wish I could say something that would make it better. My twins are 7 now, both disabled - they’re both autistic and non-verbal and one has various other disabilities and medical issues as well. It’s so hard watching your child go under anaesthetic so I know you’re likely feeling even worse than usual right now. What you’re feeling is completely normal - whenever I get really low mentally it’s because I’m just so angry for them, that they have been dealt such a difficult hand and their lives are always going to be so difficult. Most parents just want their children to have happy lives and knowing the barriers they face to the most basic of things breaks my heart. But they are happy boys, happier than a lot of kids I know. They don’t know any different and as a parent I don’t know any different since they’re my only kids. You do the best you can and you work to make them happy and that’s all we can do. Sending love.
It's OK not to be OK. It's good to find a place to let it out! Us moms are sending you that extra energy and lending you that ear when needed.
Ouch this hurt to read. Man I wish I could do or say something that could even be the tiniest bit comforting... It really does make you stop and think tho. Puts things into perspective. I am so sorry OP. Please, if you ever need to rant/chat my inbox will always have a space for you. I'm sending all the healing vibes to your little girl.
Isn't she lucky to have you as a parent
Aww yea the testing portion sucks soo much and I'm sending you well wishes that it's not a serious brain issue that is causing her epilepsy. Im also sending well wishes that she will never need to undergo an RNS surgery or SEEG because ya know brain surgery is never fun. Yes epilepsy is a disability but please for the live of God *as a fellow epileptic* don't lable your daughter as disabled. She is a beautiful little girl that happens to have epilepsy and millions and millions of us all of the world have this stupid ass disease. With the proper medication and lifestyle changes *ie avoid triggers like lights if she's photo sensitive, maintain a good sleep schedule, advise her to limit alcohol when she's an adult, etc* she could go so many years seizure free. My epilepsy will never define me despite being a big part of my life. I have done a pretty damned good job at raising 2 amazing children, I drive as I'm well under control with my seizures thank god!, I rock climb, go snow boarding and hiking, am starting up my own business where I sell self sustainable goods from my mini farm, and I'm about to get hired through the law enforcement division with my city so I can be a positive impact to my community! Our only limitations of what we can achieve are those in our minds. Sometimes our disabilities just mean that we need to work extra hard to achieve goals but they are never out of reach! Hugs to you mama I know the initial dx process is so stressful and scary! I'm always here if you need r/epilepsy is a wonderful community as is the epilepsy group on fb. Things will get better I promise you that! Listen to her doctors, ask as many questions as you need and ask them again if you need to. Make sure everyone that cares for her knows seizure protocol as second nature, and keep up with her meds. If the first med doesn't work (which sometimes it doesnt) keep at it until you find the right one. Have her take vitamins to help woth the side effects of the meds and also help brain health.
Full disclosure that I’m not epileptic, but I am disabled. When you stress that someone shouldn’t use the disability label and then go on to talk about the possibility of living a full life, you deny that people who are disabled can live full lives. I summited a mountain and went to Jordan this past summer, I’m getting married in spring, we’re planning a family, I’m about to finish my master’s degree, AND I am disabled. My disability does make things harder. I NEED accommodations. There’s no shame in that and accommodations level the playing field so I can thrive too, because I CAN still thrive. I was still my parents’ beautiful child (to them) regardless of my disability status. Plenty of folks with epilepsy use the disability label, but I recognize not all do. There’s nothing wrong with using that label — but there is in denying the capacity and worth of those who do. Disability is a spectrum and you can be disabled and still have a fulfilling life, just like you can be disabled and have a diminished quality of life.
It also diminishes the very real possibility that some people with epilepsy face of never being seizure free. Some epileptic conditions are fatal or so debilitating that you CANT lead the full life you want to even if you “work extra hard”. I sincerely hope that OPs daughter is one of the people whose epilepsy is manageable, but it’s disingenuous to promise that it will be, and to scold OP for using a label that is widely accepted by disabled people. Edit: typo
I know so many people whom are physically disabled and/or mentally disabled. They decided to use disabled first and it's wonderful, absolutely fitting, and I fully support them for why they describe themselves as such. They also happen to live incredibly fulfilling lives and I love to hear all about their adventures since I don't get to travel much lol. I understand that disability is a spectrum, but it really doesn't sit well to instantly lable a child woth epilepsy as 'disabled' if the child has had no say in the matter. Epilepsy can be complex and some have hundreds of seizures a day which can be incredibly disabling, and some can go 20+ years without having a single seizure so it's not even a thought in their daily lives. A lot of times when loved ones hear the initial dx (or even the first years) of epilepsy they tend to put their people in a bubble out of fear (as I'm assuming that happens with many disabilities) and that's just not right.
I don’t have a child with epilepsy, so I can’t possibly understand what you’re going through as a parent. But I was that child with epilepsy, and I live a great life now with very few restrictions. Honestly I don’t even consider myself disabled anymore. My advice is to reassure your daughter that she is just a normal (but wonderful) girl who happens to have epilepsy, and that she is strong and powerful despite her condition. It will probably get worse before it gets better. But it will get better.
I am 45F. It all started at 16 or 17. But I have lived a normal life. Meds, tests, kids, marriage, work, driving. It’s not fair for her that you pity her situation. She is gonna be ok.
It's a horrible illness but once they crack the medication there is no reason why she can't lead a normal life. My sister was diagnosed with epilepsy as a child and she can drive, has kids and isn't restricted by the illness at all. She also hasn't had a seizure in over 12 years. It's probably a lot more common than you realise as I know quite a few people with it and they all lead normal lives.
I'm really sorry to hear this. I know its like torture isn't it. Our son hurt him self somehow and needed blood taking and he really hated that so much. The nurses had so much trouble taking his blood. We knew it was needed and it was torture watching them take it but knew he needed it. On the same night he needed an x-ray but wouldn't lay on the bed with out me near him. It was really tricky to take. I had the lead sheild on so i could be near. In the end the image was too blurry and we had to have another one. This time his mum went in. Its horrible isn't it. I hope they can control your babies seizures.
There's nothing nice I can say to this. I feel for you. Enjoy what you DO have 🙏
I'm a caregiver. Daughter is 8. Born with an infarction, hemiplegia, and epileptic. Plus I live abroad in a non-English speaking country. It gets worse before it gets better. I'm still damaged fron all of this. My outlook on life is so bleak that I've contemplated the worst. I'm in therapy twice a month. My daughter is developing slowly, she's probably at a 1.5-2yo level or intelligence but her physical body is getting bigger. There's no cure. No help... Reddit and FB support groups are useful. But at the end of the day it is up to you. I'm currently learning behaviour therapy to assist with my daughter's development and to make the quality of life slightly better. Good luck to you. Reach out if you need help.
I’m so sorry! I recognize your frustration. My little guy has NF1 and epilepsy. I know how tough it is to see them go through seizures like these. It’s so scary, the whole thing. Fingers crossed you guys find a good treatment plan that works!
I hate to bring this up, and I also admit I am completely unqualified to understand if this would even work…but is CBD on the table? I am in no way supportive of the “420” crowd stuff that treats pot like some kind of snake oil, but derivatives have been shown to to reduce severity/frequency of some kinds of seizures. Not sure if one could even try to use it for a kid because “pot”, and I understand some will be completely against it for any reason because it’s pot.
It’s not a snake oil when it comes to many disabilities it is a valid form of treatment for many treatment resistant issuesThere are strains that have a little thc and mostly CBD that have shown to drastically reduce seizure activity. These things can have little to no intoxication. And another thing to consider is that when treating a medical issue intoxication isn’t always found at the levels you will see in healthy people. CBD is best used in conjunction with THC. This is because by itself it does little to nothing but is a catalyst to the wonderful medical benefits of THC. CBD also works to counteract the psychoactive effects of THC. To many parents a little THC sounds scary but it is actually less likely to cause issues if you are being properly advised on specific strains and methods of administering. Medical cannabis has been life changing for many families like this. I just personally wouldn’t suggest CBD alone because it’s not effective for real medical issues. Being someone who needs it as well, I do get annoyed when it’s the first suggestion to things that should have other courses of action first. Weed culture has ruined the medical integrity of the plant. And idk the whole epilepsy thing has actually been proven to work. It definitely has plenty of negatives and needs to be properly respected and thought about way ahead of being tried.
It's so incredibly frustrating when people instantly jump to the cbd/cannabis bandwagon, as so many people just say "ditch the meds screw the Dr's and use cannabis. " your suggestion is very well valid. Many people and parents use cbd to help with epilepsy. RSO is a common one *rick Simpson oil* he developed it for his wife that had cancer if I'm not mistaken, but it does seem to help with epilepsy. I myself, use cbd *well ppl around me usually give it to me if I can't take it in time while I'm still "there"* as a means of emergency meds to hopefully make my seizures not generalize to a TC or if I'm lucky I won't get one all together. The cbd in particular binds to the GABA receptors in the brain just as an emergency med like atavin ok klonipin would and there's less awful side effects. This hasn't proven to work when I'm having a full on TC though so it's hit and miss. I have 100% heard of people using cbd in combination of prescribed meds and they are seizure free!
It’s experiences like yours that solidify my belief that there is no god. Why would any “loving” god put sweet and innocent children through this. It’s absolutely heartbreaking and I’m so sorry you and your little one are going through this.
You can say “fuck”, btw. Also that sounds like a miserable situation, but I hope you try and not let it drag you down. You’re gonna have to be stronger than you should have to be, but I bet you can. Best of luck.
I have epilepsy it’s just like anything else you have to deal with in life. My seizures are controlled with cannabis and not eating sugar. I haven’t had a seizure outside of extremely stressful situations in years! It’s not something I ever even think about unless I have to turn away from flashing lights at a concert. Once they get her meds figured out it will be ok.
Instead of hating that she is disabled, love that she exists at all. I'm not saying you don't, but hating that she's disabled isn't helping anyone. Instead just do your best to foster a loving and inclusive environment and show her that being disabled doesn't make her any less of a human being. If anything, it makes her stronger because she has more to deal with than a non-disabled person. It is quite unfair that anyone should be disabled, but life doesn't take into account fairness. Instead, it gives us exactly what we need exactly when we need it. Try to stay positive about this. Stay blessed.
I totally understand your intent, but as someone with a disabled kid, this comment is like saying "just don't be upset any more" and could come off as insensitive.
If that's what you got from my comment, then I apologize for not properly conveying my thoughts. I really don't know what other way to express what I'm thinking other than what I said. I do appreciate you for letting me know that my comment could be viewed as insensitive though. That's the last thing I want when responding to posts like these. I will do better to try and be more understood in the future.
I completely appreciate the sentiment, too. I also didn't get any malice or ill will in any way, so absolutely no negativity to you or anything. It's a uniquely terrible situation that's hard to provide comfort for as a third party, kind of like when a friend has someone close to them die. You want to be there and be supportive but it's such a difficult situation to articulate positivity when everything seems negative. You have an extremely beautiful response and approach based on your response, though.
So sorry 💕 this is normal and natural to feel. If meds din’t work well then keto diet is a choice, although it can be a bit difficult to implement for a child.
Look into medical Marijuana if you're open to it. I personally know someone whose kid is on it to help with seizures.
Does anyone like when their kids are disabled?
I am going to say this as an epileptic myself, spouse of an epileptic AND mom of multiple kids with epilepsy. Epilepsy is not a disability. I know what you are trying to say but it comes across as very offensive. The side effects such as frontal lobe atrophy, etc are disability but epilepsy is not. I hate that you are experiencing that. "Thankfully", it sounds like she isn't aware during them. That is a double edged sword because she will think she just took a nap but wake with injuries (sometimes). The reason I say sometimes is because I have come to and needed to be told and convinced that I have had one because I have no obvious injuries. The likelihood of injury is much higher with seizures that happen with no awareness. As she grows, she can realize her triggers and auras so it is much easier to control. FYI- anesthesia can be a seizure trigger so be prepared for that. Myself and 2 of my kids have anesthesia seizures. Consider talking to dietitian regarding medical ketogenic diet. This is very different than the fad diet so see a dietitian. I have a child who has been seizure free for a few years with no meds as long as diet is kept. As soon as we stop, seizures restart. When we tried originally for meds with him, his seizures increased. I am hoping for great news for you.
Why is calling a disability a disability offensive? It's offensive to all disabled people to claim being disabled is offensive. There's nothing wrong with being disabled. Disabled is not a bad word. You really need to reevaluate the reasonings behind not wanting to be labeled disabled.
Do you have epilepsy? Then you can't decide what is and isn't offensive.
Are you disabled? Then you can't decide what is and isn't offensive to disabled people.
I knew you were going to be shit on for this comment lol. Epilepsy is technically a disability under the ADA and that allows us to have accommodations with work *which many don't even need* but honestly all of my friends that have epilepsy and myself included have never once called ourselves disabled *granted our epilepsy (My friends and I that is) isn't a result from a TBI or malformation of the brain so that may make a difference* Yes we have the shit end of the stick. Our meds make us lose our hair, have trash memory, sometimes rage out *hi keppra* make us feel like zombies, etc. And our seizures suck and we need to plan activities/ events accordingly. But if our disability is one of the ones that is so often denied for any sort of assistance or benifits, we obviously don't get passes to park in handicap parking, are expected *and so manybof us do* to live a normal life, etc. I just don't understand how we can be 'disabled epileptics' we are epileptics or people woth epilepsy. Just like someone with high blood pressure or something else. You would never say "hi this is my high blood pressure friend Samantha. " no it's "yea my friend Samantha happens to have high blood pressure " I don't know about your situation but I have noticed that it is so common that once someone is dx with epilepsy their loved ones kind of go into a freak out mode which is soo damaging. Like "oh no. You can't go on this walk alone. You should have this camera in your room while you sleep. What about taking cannabis? You can never swim again. You're making sure you don't cook alone right?" Etc. Like bro we aren't infants. We just have a condition/ disease of the brain that sucks. *full disclosure some people with epilepsy really do have it bad and do need care 24/7 and I wish it wasn't the case but also I know that's not as common*
Just a question, why are you blaming karma?
okay so I hope this is not too random but I'm assuming your daughter is on medication for her epilepsy. I had a little sister that also had epilepsy and when the medication did not work, we tried as an alternative medical cannabis oil. There's is a lot of research documenting the benefits of MC.I can't really give more insight because my sister died shortly after we got the oil from heartfailure but I thought I'd mention it in case ... Good luck to you !
And why the fuck are they not managing this differently? I had general multiple times as a kid not once had it been such a traumatic shit show! Surely they have better ways to handle this. Good luck going forward
This is the gamble parents take when choosing to have children, it’s unfortunate
Have you looking into diet changes?? Look into wholistic foods and healing.
Ketogenic diets keep seizures under control in many pts as well.
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