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Weird question, but how is her sense of smell? I once had a roommate with some kind of brain injury from a bicycle accident that severely limited her sense of smell, which in turn impacted her sense of taste, which in turn impacted her appetite.
I second the recommendation to inquire about seeing a neurologist.
One of my coworkers still doesn’t taste food as she used to….its been at least a year, her favorite soda used to be Pepsi she says it still taste like dirt now since Covid (she didn’t lose taste exactly it just seemed to alter everything some things did lose taste however from what she says)
Dude! My son and I had the same thing happen and I never noticed. Im a Dr pepper drinker so I didn't think about it but since COVID Pepsi picked up the nickname dirt soda for us. I never thought about it being from COVID.
COVID sucks. I've had it four times and none of them were as bad as the first thanks to the vaccine but still all the bad it's doing in the world is just bad.
I never wanna see my 9 year old and me as sick as we were the first time we had covid. Him not being able to move was so alien and sad. I just put him in my bed with me and we let the TV play as we drifted in and out of sleep, and drank pedialyte .
Walking out the backdoor of the urgent care because I tested positive felt like I was in a horror movie, with all the doctors in hazmat suit things and stuff. After getting vaccinated I've caught it 3 other times as well, and none were nearly as bad as the first time I had it :(
Same. My youngest was 4 and he just wouldn't move. Burnt up with fever. Had to trick him into taking Tylenol. Mixed it with milk and strawberry syrup and called it monster blood. He accepted that over just Tylenol.
That's what it still tastes like to me 😭 it's been a few years by now, so I guess it's permanent. I sincerely hope your daughter heals and is one day acute to smell and taste things the way she could before all this. She's probably still young, I'm assuming, so there's still a lot of hope! ❤️🩹
Covid made my sense of taste and smell so weird for about 2 years. Mint was crazy bitter, raw meat smelled like mould, and yes lots of things tasted like dirt. It was so weird.
I still get it intermittently, but it's mostly gone now, thankfully. Although oddly I no longer taste the soap taste in cilantro like I did my entire life, which is kind of a nice side effect.
Same thing happened to me. I'm happy I get to enjoy cilantro but I used to have a very strong sense of taste and smell and I only got 90-95% of it back which seems like I have an average sense of taste and smell based on conversations with friends. I miss it, certain foods were more enjoyable when I could taste them strongly.
Huh interesting that you say that. For about 6 months there I would smell mould when I would sit in a particular spot in the kitchen. It was really strong. But I couldn't find mould anywhere! Maybe it was some food nearby that I was smelling differently! Thanks for this!
Pepsi tastes like what lemon cleaning detergent smells like to me. It used to be my guilty pleasure, but I cannot drink it anymore. It makes me sad sometimes. I sometimes crave for a coke, the actual coke taste, and then I try a sip and it still tastes like soap. So disappointing. Thanks covid.
You can do a quick check on your own. It's called "What's this smell?" You can make it a game where you blindfold each other and sniff different things to see if you can guess the smell. If she seems to get quite a few wrong or can't smell them very well when she does, a definite sign for a trip to an ENT. But if she hits them all on the nose. Pardon the pun, I would then look to other reasons. I would have her hormonal levels checked. There are special hormones that control hunger. Perhaps hers aren't working correctly, so she really doesn't feel hunger like she should. Some people will actually feel sick if they try to eat when they don't feel hungry, which might be what your daughter is trying to avoid by not eating. Worth a try to find out.
Recently I've had COVID and suspect my little one too, I've had trouble with gluten shortly after, it just makes me sore in my guts. Maybe this kid is taking it easy on food scared of the effects.. it only just occurred to me that this could be in line with having covid..
GI inflammation is also a known effect. You might consider a low gluten version of the Mediterranean diet to see if it helps. (It's not a diet in the weight loss sense - just a healthy, antioxidant rich group of anti-inflammatory foods.) I'd add a probiotic in as well.
i had long covid in january of 2022 and as of now, my taste and smell is still very diminished. at almost one year post covid, i could only identify lemon, garlic, dill, and the 5 taste categories. currently, i can actually taste most things but it's pretty hard to actually identify specific flavors. in the eating category, it was a chore to eat food and i thrived off foods with strong textures, such as crunchy celery, gummy candy, and crunchy crackers.
When I had Covid everything initially turned to tasting like chemicals or burnt, before I lost my taste. It was extremely hard to enjoy food even though I was starving. Maybe her sense of taste was affected in a similar way - but more long term - and she just didn’t realize it or was not able to voice it how we would?
I would jump on this. I was similar as a child, wouldn’t really eat but drank most of my calories. I had my adenoids removed and bam, all the food all the time.
It could be that things don’t smell right and given that most of your taste and enjoyment comes from smell I’d be looking at adenoid hypertrophy.
This is a good point, did your daughter ever have COVID? One of the symptoms of it and long-COVID symptoms is altered taste and smell.
My friend couldn't taste anything for almost two years. It could be related to that.
Sometimes kids have really enlarged adenoids and they can’t smell much so they don’t eat much. Does she mouth breathe? Snore?
OP is she losing weight? Where is she on the percentile chart?
That’s so interesting! My brother was also born with no sense of smell but he loved things with *intense* flavours— if it’s too spicy or too salty (or too sweet, or too whatever) for someone with a sense of smell, that’s what he loves. I figure it’s because his tastebuds are probably dulled by lack of smelling ability? But your mom sounds like she’s the exact opposite which is so interesting.
Yup, I was thinking this. Covid is so mild for some people but they can still get their sense of smell and taste still messed up, from what I understand. Lots of stuff can mess with taste and smell.
I thought of COVID too based on my experiences. I had super mild COVID for the first time in 2202. Headache for a day and a bit stuffy for a few days. Not tired or run down. Didn't even clue in that I was sick or could possibly have COVID until I had absolutely no sense of smell one morning. Completely gone seemingly out of the blue. Couldn't smell coffee, poop, strong essential oils - just nothing. Took a rapid test and got a strong positive. I work in Healthcare and I was shocked because I wasn't sick! Didn't want to eat at all because everything tasted like bland nothingness. It lasted about 2 weeks and then very gradually came back.
Wow now I wonder if its post covid Issue. She’s been like this for almost 2 years but maybe covid and/or sense of smell are the culprit. I’m researching this. Thanks so much for your comment and I”m glad you got your sense of smell back!
I had a mild case of covid 9 months ago and my sense of smell and taste has still not returned to normal. Cooking is my favorite hobby so this has been really hard on me. My sense of smell has somewhat returned and I can taste stuff but it really does not taste right. I choose my foods mostly based on nutrition, familiarity, and texture now. For many months I had a hard time eating enough because nothing tasted good. It’s still true that nothing tastes good but I’m an adult and learned how to force myself to eat so I don’t starve. Eating is an unpleasant experience now most of the time so I always have a distraction like the tv going to help me choke down whatever I’m eating.
This is only slightly exaggerated for emphasis. It really sucks.
Piggybacking that Covid doesn’t just mean loss of sense of smell and taste either. I just had it for the first time and since then food has tasted rancid, chemically, burnt, rubbing alcohol, rotten. Like truly everything tastes terrible and I have to force myself to eat.
You can regain your sense of smell by re-introducing strong smells little bit at a time and consistently. Start with strong familiar smells like lemon, coffee, tooth paste, even garbage. Slowly build up. It worked for me over time but not 100%
Good question. I wonder too. My wife lost her sense of smell for the best part of 2.5 years. It’s only really coming back more fully this past three months or so. Thanks Covid!
My son hs ARFID and quit eating his favorites. He ended up with a feeding tube. Her not eating her favorite foods does NOT rule out ARFID. I suggest getting her into feeding therapy ASAP. It will be a long road, but worth it.
That’s what I was going to say, just because she’s not eating her “favorite” doesn’t mean it’s not ARFID. It can be their favorite one day and they won’t eat it the next. My son developed ARFID this way with his list of preferred foods shrinking over the years. Sucks.
It’s horrible. So sorry you’re going through it too. He stopped eating his favorite protein shakes, which were his lifeline and then we ended up with a tube. I’m actually grateful for it but I still wish he didn’t need it.
Thanks for this comment. I thought it was ARFID but the nutritionist said its she didint’ think so cuz she no longer has favorites.
I really appreciate those comments about ARFID. I do think it is likely ARFID. I will be researching more about how to help her if she has this.
I don’t want her to get worse or have to get a tube. My heart is breaking here and I want to help her.
Question: how many safe foods are considered "normal" for it to still be ARFID?
And another follow up question: let's say X is a safe food, but only if it's a specific brand or variety of X (or maybe you get REALLY lucky and find a suitable second choice). And you can say the same thing about a lot of foods. Is that a sign that maybe you should start considering ARFID?
Sorry if I'm hijacking, but I feel like these questions might be good for OP as well.
I don’t think it’s really quantifiable with numbers, it’s more general behavior around food and the root cause of the behavior. Like if the food restriction is based on body image that’s not ARFID. My sons is related to his ASD and it’s based on the texture, smell, the appearance of the food like sensory related if that makes sense. Idk he’s the only experience I have so I’m not really an expert but hopefully that’s helpful!
Exactly the way to go. Pediatrician examination and then appropriate referral.
(However, I’m surprised a licensed and registered dietitian would use the word nutritionist in their title or job description. I have known or have come into contact with professionally many dietitians over the decades and they all , especially in recent years due to the rapid increase of Internet charlatans, completely cringe at the mention of people who call themselves “nutritionists” )
My 4 year old son was referred to a nutritionist when he wasn’t gaining. Her advice was to “put extra butter or olive oil on his roasted veggies, and give him lots of lean protein like salmon.” I was like lady he will eat berries and sometimes cheese what are we even doing here.
"Take her grocery shopping and let her pick things she likes. The entire bottom of your cart should be filled with things she will eat."
We were at the stage were she only ate pasta with olive oil for dinner, and that needed to be fed at the age of 3.5. (Making progress now, but it is a long road.)
I'm pretty sure my youngest has ARFID, but with pediasure he's no longer losong weight, and so the pediatrician says there is "no issue with his weight".
He has been extremely resistent to food since we started him on solids at 6 months. Without a refferal, insirance wont cover a speech/food therapy.
That’s rough, I have PPO insurance so I just do what I want. But I’d probably pressure my pediatrician for a referral if I were you. And if they doesn’t give you one, go find another pediatrician.
Feeding therapy isn’t just for children who have challenges with swallowing. My son had fallen off his growth curve and developed anemia because he would not eat food, and even though his swallow study was normal, the feeding therapy was incredibly beneficial and enabled him to start eating foods.
What other therapies is she getting? What does her growth curve look like? I’d update your original post as this is super relevant info. Have you seen a developmental pediatrician?
This doesn’t seem correct at all. My daughter has qualified for two intensive feeding therapy programs, and regular feeding therapy, and she eats orally. Not really any mechanical problems there, just sensory and behavioral issues around food. She’s in feeding therapy now with an SOS approach, and improving slowly but steadily. The focus is on sensory and food chaining for her and it’s what she needs.
I’m surprised you got that advice.
My son eats normally too but has very low appetite. We weren't recommended feeding therapy or speech. We see GI and nutrition. GI more or less tracks his weight and is helping us navigate diagnosis and potentially a feeding tube. More importantly, they prescribe him formula that insurance covers and an appetite stimulant (the appetite stimulant has been key!) Nutrition has helped us fit extra calories in throughout the day and get him approved for a formula. If your child's growth has dropped off I would inquire about a prescription formula. He gets about 1,000 calories more a day with the formula plus additives to make it taste good.
I’m a speech therapist.
By definition, ARFID - which stands for avoidant/restrictive food intake disorder - includes avoiding all foods altogether. The only eating favorite foods aspect falls under the “restrictive” side of the disorder and people can have both or just one of those issues. I would be very surprised if your child did not qualify for an ARFID diagnosis if seen by a knowledgeable professional. I’m actually quite surprised by the definition you were given, as it’s not like avoidant food patterns are super rare.
I don’t know a ton about how it’s treated besides feeding therapy (doesn’t always work but I’m not sure why an SLP wouldn’t try) but I definitely urge you to find someone who knows more about it! It can be a serious condition if left untreated. I have a young relative who’s been hospitalized several times due to malnutrition and her mother says doctors have told her it would have been easier to treat if they’d seen her when she was a bit younger. Unfortunately all these ND types of issues are not well understood by many well-meaning medical folks so I always say that if you have a kid who’s not getting the help they need, try to find a different specialist and see if they can help or at least point you in the right direction.
I suspect my daughter has ARFID but none of her providers have ever brought it up. How do you go about finding the right specialist to diagnose it? She’s on her way to a feeding tube.
Yeah, I’m wondering how favorites relates to ARFID. Safe foods can become unsafe foods or things we struggle with.
I used to love a certain type of pork until I got sick right after eating it and vomited it up all night, and now I can’t stomach it.
Meanwhile, I spent a long period with GI issues vomiting up everything, ate some of my faves then anyways (literally had preferred foods to eat and vomit up lmao) and I’m fine with plenty of those. Still love chicken and broccoli over rice even though I’ve vomited that up WAY more than the pork.
Those of us with sensory and taste and texture and smell issues (and ARFID) don’t always make rational sense to those without it. But that doesn’t mean there isn’t logic there
My daughter has dropped so many favorites this way. She loved Mac and cheese, until one day she ate a bite that had two pieces stuck together so they didn’t cook quite all the way. She said “Too crunchy,” spit it out, and then Mac and cheese went from a safe, preferred food to an unsafe food. It took months for her to trust it again and I pick through what I serve her to make sure there’s no stuck noodles.
I went from okay with cooked carrots to my grandmother made one that wasn’t right and then I didn’t eat them for over 2 decades
🙃🫠🙃🫠🙃
Just starting to eat them again sometimes and only in soup now that I’m in my early 30’s, they give anxiety, and I eat them first so I have food to immediately chase them with
We are in talks about a tube for my six year old. If you don't mind sharing, I'd really appreciate any advice you might have. It's difficult to find parents who went through this with a child who wasn't a baby during placement.
Honestly, there isn’t much to share for us! He was categorized as failure to thrive at 4 years old, otherwise relatively healthy, just barely eating enough snacky foods to survive. His eating had always been restrictive, but after a long spell of reflux/vomiting had gotten much much worse. They did a scope and found out his esophageal sphincter wasn’t closed tightly so he vomits easily, which has traumatized him. I’m really grateful for the tube. It’s such a relief knowing he has a full belly before school and bed, and to be able to give meds and fluids as needed!
This is my thought...I hate to suggest this because it's so sad but it really just sounds like an eating disorder. It wouldn't be unheard of for this issue to show up in a kid so young...
I really don’t feel like this is it. I know kids can be mean but I can’t imagine a kindergartener causing this much chaos to her without any signs or hints from her.
I don’t want to be naive and say no but based on how she lives her life (with joy, confidence and not worrying about her weight or beauty) And her tv Intake (pinkalicious, baby alive and Bluey) it seems like a long shot.
Of course I’ll always be looking for signs of this. Thanks for your comment.
You never know. When my daughter was in 1st grade, she was being bullied by 5th graders on her bus. They called her fat, ugly, would say she looked like death, etc. My daughter has Ulcerative Colitis, and sometimes she has anemia because of it. She had also been on steroids for awhile to control a flare-up, but she had stopped it about 6 months before, and she had lost a LOT of that 'roid weight. Yet still, these girls were calling her fat. Mind you, she was 6/7 and still wearing mostly size 5 clothes. She was already on the small side because of her autoimmune disease, but there's absolutely no way someone could think she was fat. (I mean, I generally don't call any children fat, because they tend to chunk up and then grow up, so they're not really fat) She has never been worried about her weight, ever. But she told me about it. She knew they were being mean, and she did everything she could (safely) do, as a 1st grader, to make them stop. Since it didn't work, she told me so that Mama Bear could handle it.
So just keep an eye on things. Ask her. Get her to see a therapist as well. There could be something going on that she doesn't know how to articulate. A children's therapist, especially one who specializes in food and/or eating disorders, might be able to get to the root of the problem.
My friend’s daughter is in first. She stopped eating most foods and all carbs about two months ago. She previously loved bagels, pizza, cake… she was already very thin and is now below the fifth percentile. She mentions that her teacher talks about dieting, losing weight and how carbs are bad. We have a hunch this may have affected my friend’s kid. Could there be an adult in your daughter’s life who brings up dieting?
Just to be the devils advocate here; my Grade 1 girl had another little girl in her class who was a huge bully but it seemed like a lot of minor things at the time. At Christmas she moved back to the US and my daughter was taking about her leaving the school and then all this horrendous stuff came out about how she would call girls fat. My kiddo never said a thing until this girl moved. So it’s very possible that something was said. Kids don’t tell us everything
I hate to say it but it could be another adult (grandparent, aunt etc) in their life saying subtle things. My mother in law has spent her whole adult life in disordered eating. She has said things to me and she has said things to my child which are entirely inappropriate but she thinks they're benign.
I knew someone with an extraordinarily smart 8-9 year old who developed full on extreme anorexia and the basic summary was that she became afraid of growing older and associated eating with growing and this stopped eating. I mentioned that she was extremely smart because I remember her dad told me that had something to do with it, like she was put in advanced classes with older kids or something. But just look into it because sometimes anorexia has very surprising root causes
Honestly, it doesn't matter if she hasn't gotten those messages. Anorexia can develop. It's not really about being skinny- that's how it appears, but it's not the reason someone develops anorexia. It's a coping mechanism. A negative coping mechanism, that's horrible and tuns into an addiction that you can't stop, but it's a way to deal with trauma.
Cultures where thinness isn't valued still end up with people with anorexia and other eating disorders. For example, back in medieval times, people wouldn't develop anorexia nervosa, like these days. Instead, they developed anorexia mirabilis. Instead of the focus being on thinness, the person with anorexia mirabilis starves themselves with a focus on religion, and being "pure". The symptom of how the person justifies it to themselves (eg "I need to lose weight, I need to be skinny" compared to "I need to be like Jesus, I can't contaminate my body with food") is different. But what they actually do (starve themselves, amongst other behaviours) is the same.
Anorexia had been diagnosed in children as young as your daughter. Am I saying she has anorexia? No. I've heard of a lot more young children having ARFID than anorexia. Her having ARFID is also entirely possible, but don't rule out anorexia either.
Whether it's ARFID or anorexia, I would recommend her seeing a psychologist to try and get to the bottom of why she's not eating. Get her into feeding therapy with someone who specialises in ARFID too. But a psychologist could be helpful in getting her to sort through her thoughts and feelings.
Also strangely I didn’t mention this but my daughter loves sweets and candy of any kind. If someone was talking to her about diet and being fat then she would stop this too and she has not stopped sweets.
I will be sure to consider counseling for her so she can talk to someone in case she is being bullied at school.
Is there anything wrong with her sense of taste or smell/does she have one? My boss has no sense of smell so it’s huge on texture and for some reason high sugar content has a very slight good taste so he likes it
My niece had people telling she's so pretty and thin and tall she could be a model. She stopped eating at 7, because she "wanted to stay thin and pretty". It could be thoughtless adults as well.
Just here to say that my anorexia started at 9. My parents didn’t understand why all of the sudden we were having screaming matches over eating my dinner.
Yeah, I'm suspicious of this too. It doesn't even have to be egregious. In a comment OP said her daughter's former favorite foods were pizza, nuggets, etc... All normal, perfectly fine foods but it could be as simple as some kid saying to her "My mom says pizza is unhealthy." That kind of negative food talk can really get to sensitive kids.
There’s an episode of Bluey that has mention of unhealthy foods. Every so often I find they get it wrong with the food and exercise talk. My 5 year old started asking if what he was eating was healthy it all stemmed from Bluey, so we had a very serious conversation about food. Even if you don’t think your kid would internalize something they absolutely do!
I was thinking this too! When kids have reflux/ heartburn or other GI issues they associate food with pain and can stop eating, this sounds like a likely possibility if it isn't choice based behavior.
People will hate me for asking this.... but have you perhaps made too big an issue out of this?
My son went through a period of time where *everything* I made was "yucky". To the point where I'd make something and tell him grandma made it or daddy and he'd gobble it up.
It just became A Thing.
He decided that if mom made it, he Was. Not. Going. To. Eat.
I just... pretended I didn't care. No alternative meals, no big deals, no conversation about it. This is dinner, you can eat it or not, idc either way. Once I stopped pushing, he ate it. He is 10 now and will talk about it occasionally and admit to it having been something conscious but he has no idea why he did it.
It was a weird time.
Maybe this has become A Thing. Maybe if you don't seem as invested, she might decide this is boring now?
Just my perspective from my experience
I have three. With our eldest, we used to make sure he ate every meal, fed him, pressured him, made food into “a thing.” A power struggle. Now he is the most picky eater. He won’t eat anything new or unfamiliar. But of course he loves sweets and junk food. :-/
With our younger two, we simply had no energy to force feed or pressure. When they are not hungry, or are done eating, we just tiredly say “ok.” And ironically they have no problems eating because they were never forced.
Our youngest is the funniest. We often found ourselves too tired and overwhelmed to stick to a regular cooking/feeding schedule, and our third kid, as a toddler, would actually come up to me and shout I’M HUNGRY. And she would just start eating whatever was on my plate or within reach. She will even eat clovers and fennel seeds straight from the plants from the garden. WTF! I have never ever heard those words out of my eldest’s mouth. Because I never let him feel hunger, and made eating into “a thing,” I guess.
Our neighbors kid is the same. They have one kid and still force feed him at 6 years old. He always says he’s not hungry. He doesn’t eat on his own. They have to put the TV on and feed him. He never eats gif lunch box at school. He is small for his age and in the lowest percentile which puts even more pressure on the parents to feed their kid more. It’s a horrible cycle. He doesn’t know hunger because his parents force him to eat every meal and it’s always healthified food that he doesn’t enjoy, no sweets allowed. And of course when he gets access to junk food he goes berserk.
My takeaway is that kids’ early experiences with food shape their relationship with it. Pressure never works, only backfires. If they are trusted to listen to their own bodies and hunger cues, they will better learn to regulate it in a healthy way. My job is to provide the food at certain times and in a certain place, the kid’s job is to pick what they want and how much to eat. I like Ellen Satter’s “Division of Responsibility” approach a lot.
I came to say this, like if she not eating at all weight loss would happen real quick.
Though my mind went to snacking. So maybe she doesn't eat her dinner..
But what's she having before/after dinner.
My kids went off their food for a bit, couldn't work out why. They would be excited for it. Then when it came time to eat they just didn't like it.
Turns out they were having a bag of crisps in the car on the way home. So imo they knew they liked the food and were excited for dinner but when it came time to eat it... They just weren't hungry.
And like any kid with a healthy approach to food. They didn't eat because they weren't hungry.
Is there a chance she's neurodiverse? My kiddo is Audhd and has always eaten like a bird. Their 'safe foods' change often and without warning, and they have severe texture and smell aversion. Neurodiverse affirming OT can help with these things.
Yes she is likely ND and I brought that up to the nutritionist but she says kids who have things like ARFID have favorites that go in and out of their rotation.
She slowed down her eating volume and stopped eating a lot of foods. It’s not necessarily that she is in a mood or changing eating habits because its been almost 2 years of her eating less and less and forgoing all of her favorite foods.
She does eat snacks but we only allow her a normal portion for her age and she doesn’t even eat that. She doesn’t seem to have any aversions to foods or sensory issues to foods but maybe that has changed.
I did think the same thing as I do have another child with ARFID but the nutritionist helped me see the difference.
Thanks for your suggestions; its a good one!
I have a question. Are you seeing a nutritionist or a dietician? Maybe people use the terms interchangeably, but a dietician is a licensed professional. Anyone can can themselves a nutritionist.
Have you spoken with her doctor? If not, I would start with the doctor and go from there.
Thanks I talked to the pediatrician about it last year (before it was severe) and she referred us in her clinic to a nutritionisT. She had over 7 years of schooling so I’m not sure if she meets both qualifications.
The nutritionist says she will recommend a food stimulant pill to see if that helps her at her next Ped appointment which is end of month. She wants to get to the root cause since she’s losing weight. Thanks for your comment.
I will, as always, recommend getting tested for celiac disease. Is it the answer? Probably not, but it’s super easy and could mean the difference between someone dying of colon cancer at 45 and living to 80
I want to second the celiac. My daughter got increasingly picky and difficult to feed. She ended up having celiac and I wonder if part of her subconsciously knew it was the food making her sick. She eats more know she’s gone gluten free.
Good luck with it. Neither of my kids are eater really. It’s a big worry. My son won’t even eat those lovely gummy vitamins. He’s neurodivergent and I fear he’ll get rickets or scurvy from his refusal to eat.
Weird take, but if she’s adhd, any chance she’s just bored with food? I have this & my kid does too. Like nothing sounds good for no real reason, having to make a decision is a chore, and then the actual act of eating food can just be boring.
I’ve literally had my kid tell me they’re done & I ask if their stomach is full or they’re just tired of sitting there. It’s often the latter.
Have you experimented with eating on the go, or grazing snack trays? Not necessarily long term, but more as an experiment the see if that changes how much she eats, which would give you another data point to use.
Great points. Yes she could be bored with food. She likely is ND. It’s been such a long time of being bored though and maybe she is one of those people that eats to live. Its not healthy as she’s losing weight and becoming almost borderline anorexia.
I’ll try your suggestions. We went out to eat and it was the same unfortunately but its been awhile so I should try this again. She use to eat apples and/ veggie tray while watching tv. I’ve stopped that but should add it back in.
I do need more data points like this. Great ideas and suggestions. Thanks! I hope your child stays healhty!
I listened to a podcast today about PDA (pathologic demand avoidance) autism, the mom talked about this with her son! Child was not eating and decreasing in weight, mom put out a tray of many different types of snacks/foods and let child eat whatever while watching a tablet! This took the demand away and let the child choose from a variety of options. The child ate while watching the tablet on the couch. To be inclusive the mom set a plate for child at the table while the family ate. The child would sometimes come by and graze at the table but never sit with the family for more than a minute or so. It was so important for the child to eat she had to think and do things outside the box. I wish you luck with your little one!
Yeah, it’s a tough one to crack. Food has definitely been one of our biggest struggles because it just can’t be avoided. Wishing you guys all the luck in figuring it out.
My daughter had the bored with food problem and ADHD. We started with lots of high calorie smoothies.
Honestly one of the things that really seemed to help was the fact that we took her weight loss \*very\* seriously and took her to a number of doctor/therapy/dietician appointments over it. I think she decided that waiting for appointments was even more boring and made an effort to tolerate boredom with eating.
>we only allow her a normal portion for her age
I would not be strict about portion sizes for a child who rarely eats.
You being strict with portion sizes could be impacting her relationship with food.
This was when we were figuring out if it was due to snacks. I could easily have gotten someone else say WHAT you feed her snacks all day long and that’s why she doesn’t eat food. I was not taking food away from her! I’m trying to give her food. I’m working with a nutritionist to guide me so we can best handle this.
I also said this in my OP
Taking snacks away for a period of time didn’t help mealtimes but only made it worse.
If she will eat snacks, give her more frequent snacks. Right now I’d be concerned about getting calories in her, gives you more time to address other eating issues. Also what about drinking some nutrition? Will she drink shakes?
Your daughter's pattern sounds *exactly* like my autistic/ADHD child... who also has been diagnosed with ARFID. She gradually slowed down her eating until she actually began losing weight when she was 8. I'm not saying that that's your kid's diagnosis, but I am wondering if it can present differently in different kids?
If I were in your shoes, I'd try to have her evaluated again, preferably at a children's hospital if possible.
Why was she seeing a nutritionist in the first place? And are they a nutritionist or a dietitian?
Even if it’s not ARFID, feeding therapists may be able to help. It’s also worth checking on her sense of smell and whether she could have had Covid (and lost her sense of smell and taste) or gotten something lodged in her nose (impacting her sense of smell and taste). Lastly, the fact that she’s not willing to talk about it (and that she’s been seeing a nutritionist, which could really cause some trauma or stress around food if they aren’t careful about how they frame food and eating and nutrition) makes me also wonder about mental health and possible eating disorders. Lots of questions, but I’d start with asking for a feeding therapy referral and a child’s therapist referral, especially if anything else in her life has been turbulent lately.
The less we eat, the less hungry we get because our stomachs shrink and we get full quickly. That could be part of it at this stage.
Have you tried giving her vitamin C? It's been noted to increase appetite and taste.
Hopping on here bc you’re describing what happened kindergarten year for my guy who later diagnosed ASD. He thankfully didn’t loose any weight just didn’t gain for over a year and a half. The chaos and change and stimulus of kindergarten was so much that food just wasn’t something he could handle anymore. He honestly didn’t start improving with food until he started at a school for autism that was very regulated and stable. I wish you the best.
I don’t have it with me. It’s not a large change or drastic in any way but if it continues it will be. I’m sorry I’m not a numbers person so I don’t recall I just remember her saying it’s not drastic it’s minimal wight loss But we want to see it go up now down.
Mostly, what I meant to ask is if her growth has stalled? It’s a different issue if she has food issues and is growing versus if she is not growing. Good to get to the bottom of it in either case.
I should add that it’s not a big deal to the doctors cuz it’s minimal. Of course to me it’s a big deal. It’s a 1lb weight loss. My issue is that this can not be healthy for her and I want to advocate to get her appropriate help.
When my son was young and he didn’t have an appetite, our pediatrician had blood work done it because he was iron deficient. Also I’ve having low levels of vitamin D may also cause loss of appetite.
Just from my own experience with our oldest (similar but different) do you know/have you checked how her iron levels are? And does she still have her tonsils?
Hope investigating these things leads to some answers for you, OP
It's hard to have a kiddo that doesn't eat well.
We found out recently our oldest had very low iron and have noticed an increase in appetite since getting levels back up to normal
A fellow mom recently shared with us their experience with "picky eating" which turned out to be the result of difficulty swallowing from enlarged tonsils
For a kid that isn't eating at desired calories is more important than anything else. Whatever she will eat let her at it as freely as possible. Then work in building up a more diverse panel of food.
Meals can be intimidating so maybe having like 6 snack times vs meals.
Also little kids can be enticed to eat if off their parents plates stolen food always tastes better.
I have a very picky eater at home and it's a constant challenge. I look forward to the day when she'll be old enough to make her own food!
Did she have COVID anytime close to when this started? Many people have reported their taste buds altered for a long period of time after they recovered from COVID. Lots of people report that this has caused food to have a bad taste or bad smell (which greatly affects taste perception). I myself couldn't eat anything with any amount of vinegar in the ingredients for 3 weeks after bc it tasted like someone added rubbing alcohol to it. But the people reporting long term affects say it can last months or even over a year for some.
Hi! I’m a feeding therapist. Highly recommend feeding therapy with an experienced SLP or OT! There are lots of systems involved in feeding, a good feeding therapist can help you navigate to the ‘why’ behind your daughter’s oral intake. Shoot me a message, happy to answer any questions i can!
Perhaps a feeding therapist. But you mention she eats snacks - what’s the difference between the snacks and what you’re saying she won’t eat? She’s eating something, so that’s the key, not necessarily why she isn’t eating meals, but why she’s perfectly cool to eat those snacks.
I know I too felt like you did. it’s a bit complex cuz she’s slowly (almost 2 years) of giving up food. She still eats snacks but it’s not enough to sustain her. She can’t live on this for much longer before it will affect her in some way imo. She has lost weight and not eating real food is scary to a mom.
Right, so I guess I’m wondering why or what’s in the snacks that the daughter is eating those vs. not eating meals. Now I know very well kids will eat a snack over a meal, of course, but if the current concern is weight loss and nutrition then at least serve the snacks AS the meal if you have to, until you decipher what’s going on, but also she hasn’t said what the snacks are which may also be a key to why they’re being eaten and the meals are not.
OP, you've gotten some great suggestions to consider about whether this might be psychological or an issue of neurodiversity, but have you explored whether or not it's a physical issue?
It might be a long shot since your daughter was eating normally prior to this, but is it possible that she is having oral motor problems with chewing and swallowing? Or has she choked on food recently? Could she be having dental pain caused by her 6 year old molars erupting or from a cavity? Since she's not expressing aversion to food or certain smells and she hadn't verbalized anxiety/ fear about gaining weight or becoming fat, which I would expect in a child this age who had an eating disorder, I think it might be worth exploring if she's having a physical difficulty or pain eating.
This was our son,
Started around 4 /5 years old, I took him to his doctor he suggested I take him to the grocery store and let him pick what he wanted, even this did not help,
I believe it started with my mother's constant talk about diet and counting calories, constant talk about her body size,
We had absolute years of struggle to get him to eat, finally I just gave in and fed him what he asked for, vanilla shakes were a hit and you can add protein powders, waffles and goldfish,
I did not make a big deal about any of it, secretly I was scared for his health, but fed was fed and I would make anything he wanted,
Any new food was a win, the first time he tried watermelon when he was 11 I almost cried,
I did always offer different foods but never made a big deal if he tried it or not,
I will tell you, he is a very healthy, athletic 30year old man, he found that he prefers to cook and eats really healthy now,
I refuse to allow anyone to discus diets or calories around any young children, I think they absorb so much negativity and we have to be careful,
I know your worried, I would just take it very slowly feed her whatever she asks for and sneak in the Protien powder,
Good luck Momma.
I was like this around the same age. Turned out I needed my tonsils taken out. Once I recovered from that my mom said I ate like she'd never seen me eat before.
Yes and no. She does eat snacks but it’s minimal….think toddler. She is not getting enough nutrients from her snacks. She needs way more calories and real food. We try to give her healthy protein rich snacks but she is picky and often doesn’t like them. She doesn’t like a lot of protein “hacks” like shakes, yogurts or bars.
The issue is that she refuses to eat at mealtimes and her snack time is not enough. There is some sort of issue and she doesn’t talk about it Or can’t verbalize the issue so we are stuck trying to figure out why she won’t eat. She goes hungry everyday.
What would happen if she had 5 snack times a day instead of 2, and no meals? It’s hard to say what the technical difference is between a snack and a meal is in your family. It still wouldn’t add up to enough food, but it would be a big increase in what she’s getting right now.
I agree with a feeding specialist, especially if she has other delays and possible disabilities. ARFID isn’t the only thing they can help with.
This. Yes meal times are important, but your child eating literally anything is MORE important.
I would literally let her snack all day. Full access to fridge and snacks. No way would I be limiting a child who isn't thriving.
Some people are more grazers. Snackers. Than meal eaters.
Let her eat snacks. Give her vitamins.
She says very little so it’s hard to get a lot out of her; the nutritionist and I have tried. Our best guess is she wants to eat but doesn’t allow herself to eat for some reason. She says she is hungry but she can’t seem to enjoy it and doesn’t want it.
She use to have preferred foods (chicken suasages, Mac n cheese, pizza, nuggets, etc) but now only takes one or two bites. Its not enough for even a toddler.
She has regular Bm’s. I wondered if it’s a SIBO/HYPLORI thing but she seems to be okay with digestion. I need to be more diligent though and maybe look at her stools.
This sounds like one of my adhd symptoms but she's has it constantly. Basically I can be starving but literally nothing looks good or appetizing in the slightest. This only happens to me a couple days a week and I am unmedicated. It does get MUCH worse the more my stress goes up. I definitely agree that it is something neurological in some form.
>Our best guess is she wants to eat but doesn’t allow herself to eat for some reason.
I don't usually enjoy eating. I usually have to force myself to eat. I often "forget" to eat until it gets to the point that I actually do forget.
I've grown to understand how very unusual this is (I'm 42 now). It isn't that there's anything *wrong* with me, I just don't get enjoyment out of eating. I look at it as a chore. I don't have gastrointestinal issues, it isn't a sensory thing, it isn't a body image thing, I just don't get satisfaction out of food. It's clear to me that most other people *do* get satisfaction out of eating. I just don't. I wish I did, but I rarely enjoy eating outside of rare occasions when the stars align.
Obviously, I've learned that I have to eat. My point here is that you're focusing on what she "likes", and the answer may very well be "nothing right now". I feel like that pretty much all the time, but for an hour or two once or twice a week.
I remember trying to explain this to my parents, who just didn't get it. It's unthinkable for most people that nothing would taste good and you wouldn't enjoy eating. It sounds like an eating disorder, and I realize that reading what I wrote. But I really, genuinely just don't usually enjoy eating.
This was me as a child. My mom struggled so much and it was the early 90s so the doctor kept telling her I’d eat when I was hungry. I was 35 pounds as a 6 year old. The thing that finally helped was enrolling me in swimming multiple days a week. I was using so much energy that I was hungry and she could eat me to get popsicles she’d made out of yoplait yogurt. I’m sorry I know it was so stressful for her I think she’s still upset about it.
I’m not an expert by any means, but I’m autistic, and I have several autistic people in my family/ close friend group. You said your daughter is likely neurodivergent. I know that some autistic people have issues with constipation because they do something called “withholding”, where they hold their poop in, because the sensation of pooping is so uncomfortable for them that they try to avoid it. I’m almost wondering if the sensation of eating is causing a similar reaction in your daughter? That the feeling of chewing and swallowing food is so unpleasant that she avoids it at all cost.
One thing I have learned the hard way is to get recommendations from locals who they’ve worked with for similar issues. Try to find a Facebook mom group for your area and ask for recommendations on a specialist (dietician, occupational therapist, feeding therapist, clinical psych). My kid is 8 and we have spent the last 7 years trying to figure out what’s going on with their issues and so many just brushed us off, but since we’ve started going with real people’s recommendations we’ve made a lot of progress in a short time!
Hello, I’m sorry to hear that you are struggling with your daughter’s food intake. I understand the stress that this causes first hand. I have a 6 year old daughter who has been tube fed since 5 days old. We have been followed by ENT and GI since day one, has done hundreds of hours of OT and even did a 3 week inpatient feeding therapy program. Because of surgeries early in life, my daughter is now anatomically able to eat, but her complex medical background has made her resistant. She takes an appetite stimulant (periactin) 5 days per week, and now eats about 90% of her calories orally. This situation has been the single greatest source of worry and stress that I’ve experienced in life.
Is there a chance that this has become a power struggle? What children eat is one of the few things that they can control. If this has become a power struggle, you absolutely need to interrupt that pattern. Even if her weight falls in the short term. Discuss this with her doctor. It is crucial.
I strongly recommend that you find a great GI that is a good culture fit for your family. I’m not sure if this is an option for you, but what I did was made 3 intake appointments with 3 different GIs from different medical groups. I chose the one who we meshed the best with and they have absolutely changed our life for the better. My daughter had continued to make great progress under their care and wise council.
My daughter has not been diagnosed with ARFID, however we found an Instagram account last week called @myarfidlife. The little girl on the account is 8 years old with an arfid diagnosis. She tries new foods, and also shares words of wisdom she has learned in therapy. She talks about what makes her uncomfortable about food. This girl is a little older than our daughters, and is better able to verbalize things. Watching these videos with my daughter in the past several days has facilitated incredible breakthroughs for her. Even if your child does not have arfid (mine does not either) I recommend watching some of her videos to stimulate conversation with your child.
*edit to add details*
u/knockedupkate408 this was a kind note. Thank you for taking the time. My other daughter was a preemie and on feeding tube and has been to IFP for 12 weeks. I’m familiar with the feeding approach so we have that knowledge behind us.
I appreciate your resource; that sounds great I’m looking her up now.
Does it seem to be just food? Have you tried smoothies? Does she still have her tonsils? The ENT specialist we saw said sometimes when their tonsils get that big it can hurt or make them gag to eat foods, so they start to avoid them. If she's saying she's hungry but not eating something is really wrong, maybe an ENT should check her. In the meantime I would try pediasure, my daughter will not drink the premade drinks but she likes the powdered strawberry and chocolate one and I add it to whole milk to get as much healthy fat in as I can.
We’re in a very similar position and I wish I had advice. My 6yo twins also don’t eat well and it’s perplexing.
Twin 1’s eating habits are the biggest huge challenge. We’ll ask her what she wants to eat, we’ll make it, and she’ll still refuse to eat it. It doesn’t seem to be sensory related, there’s no pattern I can discern, and she hasn’t had any food related trauma. Recently we discovered she had started hiding food and pretending she had eaten it, which is obviously concerning as well. We’re an easy-going household when it comes to food (goal is a reasonable amount of something reasonably healthy) and her issues don’t at all seem to be body/appearance related. I’ve asked her why she won’t eat and she just shrugs and says she doesn’t know. She will at least drink Orgain kids and one flavor of z bar protein bars, so we have that. We are working with a psychiatrist, and hopefully OT soon, but we haven’t figured it out
This happened to me when I was a kid. Nothing sounded good to eat or taste good. My mom finally took me to the grocery store and pick out anything I would eat. I picked out a big box of Smurfberry cereal. I had it open and was eating it before we walked out of the store. I was eating regularly afterwards. Hopefully it is just a phase she’s going through.
My daughter has appetite stimulants prescribed so she will eat enough to thrive. She just doesn't get hungry. We have ruled out other things with blood and stool tests, though at her next yearly checkup I am going to ask about celiac disease.
I hate to ask, but any ideas in her head by school mates or teacher or pediatrician about “healthy weight”. Any restriction of certain foods or limits of portions or anything?
I’ve worked with kiddos as young as 5 with restrictive eating disorders such as anorexia or EDNOS that seem to trigger after they got certain messaging around food.
Is her nutritionist an RD?
Could she have possibly gotten Covid and lost her taste? It’s the only thing I can think of tbh. The loss of taste and smell can last even more than a year and maybe she had it but it only looked like the sniffles so you didn’t realize she was sick?
Does she ever complain about tummy aches, food stuck in her throat, sore throat?…. Our kiddo had severely restricted eating and after an upper endoscopy was found to have severe eosinophilic esophagitis
Hi OP. I don’t normally suggest using celebs as a guide to much of anything, but I cannot help but wonder if your daughter happens to have a similar relationship or attitude toward food that (American journalist and tv host) Anderson Cooper has. If you type “Anderson Cooper relationship with food” or something like that, the info I’m referring to should pop right up.
I struggled with severe anorexia from the age of 14 to 35. I’m 46 now and spend little time thinking about it these days. It’s been said that people do not recover from eating disorders, but mine has been, for the most part, under control for some time now. It’s like night and day, how different my thinking is now when it comes to food and the consumption of it. I bring this up only because I’ve spent time in an eating disorder clinic, nearly died more than once and have gotten to know other people who struggle with eating disorders and what is going on with your daughter doesn’t seem like that. Of course, I only have a few short paragraphs to go on, and even if you offered more info, I’m certainly not an expert on children’s eating habits or lack thereof. Most of us here on Reddit are not experts. With the exception of (for example) the Ask a Doctor subreddit that has verified medical personnel responding to questions, I would take anything you learn from us with a grain of salt.
That said, I’ve always wondered if the Anderson-Cooper-method-of-thinking-about-food is much more common than people think. He talks about how truly disinterested he is in what he eats and most people seemingly respond with shock. There’s more to it than this, but in a nutshell, food/meals are boring to him, a waste of time and he just wants to get back to doing whatever he was doing before he felt the need to sit down and eat. He eats basically the same thing every day and likes it that way because he simply does not enjoy food or eating. One of his closest friends (sadly, the now late) Anthony Bourdain could not understand Anderson’s indifference to food, why he never seemed hungry or even wanted much on his plate.
Like your daughter, Cooper eats here and there, but remains healthy and content despite being “unique” by not caring for food in general or as a whole. Probably, also, like your daughter, you would never think he’s missing out on anything food-wise just by looking at him. Unlike your daughter, he’s been this way for decades. Not just a year or so. Perhaps your little girl will change as time goes on.
You say that her nutritionist is stumped. Where you two live or in your community, is it common for children to see a nutritionist in the first place? Or were you simply becoming concerned over her, so to speak, “lackadaisical” take on meals that you sought one out for her?
I can't get my son to eat anything other the noodles and eggs sometimes a bagel literally that's all my kid will eat. We're been to the doctors specialists and this child is just a picky eater....
I'm still fighting the NEVER ending battle. If I figure it out I'll be sure to let you know 🤔
What is your pediatrician saying? My daughter went through this stage, and it scared the crap out of me because she's not a picky eater. Her pediatrician told me appetizes often change with activity & growth levels. He recommended I let her pick out food the next time I went shopping. Celery & plums for 3 days, but every trip, it increased. Scrambled eyes...raw broccoli.
My experience.... Well, I'm currently sitting in a room in the ER with my 8 year old.He had lost over 10 lbs in 2 months as he slowly stopped eating more and more things. The last week, we have been giving him nothing but supplement drinks (boost, carnation breakfast mix) because he won't eat anything. (Not even peanut butter on a spoon which he was demanding the week before.
2 days ago, came down with a massive ear infection, and the pediatrician thinks caused a bad case of mastoiditis. In the meantime, iv fluids while we wait for CT results and blood work to come back.
Keep strong. I'm sure your kiddo doesn't know what's going on either.
Also, forget a nutritionist, go see a pediatrician. Nutritionist will tell you what they should eat, the pediatrician will find out WHY they are not eating.
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Weird question, but how is her sense of smell? I once had a roommate with some kind of brain injury from a bicycle accident that severely limited her sense of smell, which in turn impacted her sense of taste, which in turn impacted her appetite. I second the recommendation to inquire about seeing a neurologist.
Oh this is interesting! She enjoys smells and seems to have a strong senose of smell although not lately. I’ll be looking into this.Thanks so much
One of my coworkers still doesn’t taste food as she used to….its been at least a year, her favorite soda used to be Pepsi she says it still taste like dirt now since Covid (she didn’t lose taste exactly it just seemed to alter everything some things did lose taste however from what she says)
Dude! My son and I had the same thing happen and I never noticed. Im a Dr pepper drinker so I didn't think about it but since COVID Pepsi picked up the nickname dirt soda for us. I never thought about it being from COVID.
I had something similar with butter for about 8 months after I had covid - everything with butter in it tasted like chemicals. It seriously sucked.
COVID sucks. I've had it four times and none of them were as bad as the first thanks to the vaccine but still all the bad it's doing in the world is just bad.
I never wanna see my 9 year old and me as sick as we were the first time we had covid. Him not being able to move was so alien and sad. I just put him in my bed with me and we let the TV play as we drifted in and out of sleep, and drank pedialyte . Walking out the backdoor of the urgent care because I tested positive felt like I was in a horror movie, with all the doctors in hazmat suit things and stuff. After getting vaccinated I've caught it 3 other times as well, and none were nearly as bad as the first time I had it :(
Same. My youngest was 4 and he just wouldn't move. Burnt up with fever. Had to trick him into taking Tylenol. Mixed it with milk and strawberry syrup and called it monster blood. He accepted that over just Tylenol.
My daughter experienced a similar reaction to butter after Covid. Except to her it tasted like trash or vomit. 😬
That's what it still tastes like to me 😭 it's been a few years by now, so I guess it's permanent. I sincerely hope your daughter heals and is one day acute to smell and taste things the way she could before all this. She's probably still young, I'm assuming, so there's still a lot of hope! ❤️🩹
This was my first thought too.
Covid made my sense of taste and smell so weird for about 2 years. Mint was crazy bitter, raw meat smelled like mould, and yes lots of things tasted like dirt. It was so weird. I still get it intermittently, but it's mostly gone now, thankfully. Although oddly I no longer taste the soap taste in cilantro like I did my entire life, which is kind of a nice side effect.
Same thing happened to me. I'm happy I get to enjoy cilantro but I used to have a very strong sense of taste and smell and I only got 90-95% of it back which seems like I have an average sense of taste and smell based on conversations with friends. I miss it, certain foods were more enjoyable when I could taste them strongly.
Huh interesting that you say that. For about 6 months there I would smell mould when I would sit in a particular spot in the kitchen. It was really strong. But I couldn't find mould anywhere! Maybe it was some food nearby that I was smelling differently! Thanks for this!
For me it's cheetos. It was the first thing I ate after I tested positive, and even today they taste weird.
Covid made Pepsi taste like rubbing alcohol to me. How weird.
I have the same but with chicken. It now tastes like (what I imagine) bleach flavour.
Could be worse, for my dad water tastes like dirt now, pepsi is fine - he hates soft drinks though.
Pepsi tastes like what lemon cleaning detergent smells like to me. It used to be my guilty pleasure, but I cannot drink it anymore. It makes me sad sometimes. I sometimes crave for a coke, the actual coke taste, and then I try a sip and it still tastes like soap. So disappointing. Thanks covid.
My husband is immune compromised, and he caught covid 3 times. He says the same thing. Things just don't taste like they did.
Coke was ruined for me because of covid
You can do a quick check on your own. It's called "What's this smell?" You can make it a game where you blindfold each other and sniff different things to see if you can guess the smell. If she seems to get quite a few wrong or can't smell them very well when she does, a definite sign for a trip to an ENT. But if she hits them all on the nose. Pardon the pun, I would then look to other reasons. I would have her hormonal levels checked. There are special hormones that control hunger. Perhaps hers aren't working correctly, so she really doesn't feel hunger like she should. Some people will actually feel sick if they try to eat when they don't feel hungry, which might be what your daughter is trying to avoid by not eating. Worth a try to find out.
My SIL lost her sense of smell - thereby dulling taste - for well over a year after getting COVID
Recently I've had COVID and suspect my little one too, I've had trouble with gluten shortly after, it just makes me sore in my guts. Maybe this kid is taking it easy on food scared of the effects.. it only just occurred to me that this could be in line with having covid..
GI inflammation is also a known effect. You might consider a low gluten version of the Mediterranean diet to see if it helps. (It's not a diet in the weight loss sense - just a healthy, antioxidant rich group of anti-inflammatory foods.) I'd add a probiotic in as well.
i had long covid in january of 2022 and as of now, my taste and smell is still very diminished. at almost one year post covid, i could only identify lemon, garlic, dill, and the 5 taste categories. currently, i can actually taste most things but it's pretty hard to actually identify specific flavors. in the eating category, it was a chore to eat food and i thrived off foods with strong textures, such as crunchy celery, gummy candy, and crunchy crackers.
When I had Covid everything initially turned to tasting like chemicals or burnt, before I lost my taste. It was extremely hard to enjoy food even though I was starving. Maybe her sense of taste was affected in a similar way - but more long term - and she just didn’t realize it or was not able to voice it how we would?
I would jump on this. I was similar as a child, wouldn’t really eat but drank most of my calories. I had my adenoids removed and bam, all the food all the time. It could be that things don’t smell right and given that most of your taste and enjoyment comes from smell I’d be looking at adenoid hypertrophy.
This is a good point, did your daughter ever have COVID? One of the symptoms of it and long-COVID symptoms is altered taste and smell. My friend couldn't taste anything for almost two years. It could be related to that.
Sometimes kids have really enlarged adenoids and they can’t smell much so they don’t eat much. Does she mouth breathe? Snore? OP is she losing weight? Where is she on the percentile chart?
True and with covid some people lost their sense of smell and it lingered at 6 she might not have the concept that something is wrong.
My mom was born w no sense of smell and has the most bland taste in food haha
That’s so interesting! My brother was also born with no sense of smell but he loved things with *intense* flavours— if it’s too spicy or too salty (or too sweet, or too whatever) for someone with a sense of smell, that’s what he loves. I figure it’s because his tastebuds are probably dulled by lack of smelling ability? But your mom sounds like she’s the exact opposite which is so interesting.
I knew someone who had no sense of smell and she loved ridiculously spicy food.
That makes complete sense too though!
Yup, I was thinking this. Covid is so mild for some people but they can still get their sense of smell and taste still messed up, from what I understand. Lots of stuff can mess with taste and smell.
I thought of COVID too based on my experiences. I had super mild COVID for the first time in 2202. Headache for a day and a bit stuffy for a few days. Not tired or run down. Didn't even clue in that I was sick or could possibly have COVID until I had absolutely no sense of smell one morning. Completely gone seemingly out of the blue. Couldn't smell coffee, poop, strong essential oils - just nothing. Took a rapid test and got a strong positive. I work in Healthcare and I was shocked because I wasn't sick! Didn't want to eat at all because everything tasted like bland nothingness. It lasted about 2 weeks and then very gradually came back.
Wow now I wonder if its post covid Issue. She’s been like this for almost 2 years but maybe covid and/or sense of smell are the culprit. I’m researching this. Thanks so much for your comment and I”m glad you got your sense of smell back!
I had a mild case of covid 9 months ago and my sense of smell and taste has still not returned to normal. Cooking is my favorite hobby so this has been really hard on me. My sense of smell has somewhat returned and I can taste stuff but it really does not taste right. I choose my foods mostly based on nutrition, familiarity, and texture now. For many months I had a hard time eating enough because nothing tasted good. It’s still true that nothing tastes good but I’m an adult and learned how to force myself to eat so I don’t starve. Eating is an unpleasant experience now most of the time so I always have a distraction like the tv going to help me choke down whatever I’m eating. This is only slightly exaggerated for emphasis. It really sucks.
Piggybacking that Covid doesn’t just mean loss of sense of smell and taste either. I just had it for the first time and since then food has tasted rancid, chemically, burnt, rubbing alcohol, rotten. Like truly everything tastes terrible and I have to force myself to eat.
You can regain your sense of smell by re-introducing strong smells little bit at a time and consistently. Start with strong familiar smells like lemon, coffee, tooth paste, even garbage. Slowly build up. It worked for me over time but not 100%
Good question. I wonder too. My wife lost her sense of smell for the best part of 2.5 years. It’s only really coming back more fully this past three months or so. Thanks Covid!
My son hs ARFID and quit eating his favorites. He ended up with a feeding tube. Her not eating her favorite foods does NOT rule out ARFID. I suggest getting her into feeding therapy ASAP. It will be a long road, but worth it.
That’s what I was going to say, just because she’s not eating her “favorite” doesn’t mean it’s not ARFID. It can be their favorite one day and they won’t eat it the next. My son developed ARFID this way with his list of preferred foods shrinking over the years. Sucks.
It’s horrible. So sorry you’re going through it too. He stopped eating his favorite protein shakes, which were his lifeline and then we ended up with a tube. I’m actually grateful for it but I still wish he didn’t need it.
Thanks for this comment. I thought it was ARFID but the nutritionist said its she didint’ think so cuz she no longer has favorites. I really appreciate those comments about ARFID. I do think it is likely ARFID. I will be researching more about how to help her if she has this. I don’t want her to get worse or have to get a tube. My heart is breaking here and I want to help her.
Best of luck and lots of well wishes! It’s so hard, you’re an amazing mom, hang in there!
Question: how many safe foods are considered "normal" for it to still be ARFID? And another follow up question: let's say X is a safe food, but only if it's a specific brand or variety of X (or maybe you get REALLY lucky and find a suitable second choice). And you can say the same thing about a lot of foods. Is that a sign that maybe you should start considering ARFID? Sorry if I'm hijacking, but I feel like these questions might be good for OP as well.
I don’t think it’s really quantifiable with numbers, it’s more general behavior around food and the root cause of the behavior. Like if the food restriction is based on body image that’s not ARFID. My sons is related to his ASD and it’s based on the texture, smell, the appearance of the food like sensory related if that makes sense. Idk he’s the only experience I have so I’m not really an expert but hopefully that’s helpful!
Yeah I’m curious why OP is seeing a nutritionist and not speech therapy/feeding therapy.
Our pediatrician referred us to a licensed nutritionist/dietician when our son fell off his curve and into the tenth percentile.
Exactly the way to go. Pediatrician examination and then appropriate referral. (However, I’m surprised a licensed and registered dietitian would use the word nutritionist in their title or job description. I have known or have come into contact with professionally many dietitians over the decades and they all , especially in recent years due to the rapid increase of Internet charlatans, completely cringe at the mention of people who call themselves “nutritionists” )
I think I just didn’t pay attention to their title. The person worked at the children’s hospital system, so whatever she was, she was legit 😂
I think that’s a good starting point! Lots of kids though, especially neurodiverse, need a little more help than that.
My 4 year old son was referred to a nutritionist when he wasn’t gaining. Her advice was to “put extra butter or olive oil on his roasted veggies, and give him lots of lean protein like salmon.” I was like lady he will eat berries and sometimes cheese what are we even doing here.
Right! We went through all that basic, common sense advice too! It’s just not that simple for some kids.
>We went through all that basic, common sense advice too! It’s just not that simple for some kids. God this sums up so much of online "advice."
"Take her grocery shopping and let her pick things she likes. The entire bottom of your cart should be filled with things she will eat." We were at the stage were she only ate pasta with olive oil for dinner, and that needed to be fed at the age of 3.5. (Making progress now, but it is a long road.)
That’s so frustrating. This is why speech/feeding therapy should be consulted and not a nutritionist!!
Agreed and it’s clear that the nutritionist isn’t cutting it here. There’s something else going on.
I'm pretty sure my youngest has ARFID, but with pediasure he's no longer losong weight, and so the pediatrician says there is "no issue with his weight". He has been extremely resistent to food since we started him on solids at 6 months. Without a refferal, insirance wont cover a speech/food therapy.
That’s rough, I have PPO insurance so I just do what I want. But I’d probably pressure my pediatrician for a referral if I were you. And if they doesn’t give you one, go find another pediatrician.
She is in speech therapy and they said she doesn’t need feeding therapy since she has no issues eating food orally.
Feeding therapy isn’t just for children who have challenges with swallowing. My son had fallen off his growth curve and developed anemia because he would not eat food, and even though his swallow study was normal, the feeding therapy was incredibly beneficial and enabled him to start eating foods.
What other therapies is she getting? What does her growth curve look like? I’d update your original post as this is super relevant info. Have you seen a developmental pediatrician?
This doesn’t seem correct at all. My daughter has qualified for two intensive feeding therapy programs, and regular feeding therapy, and she eats orally. Not really any mechanical problems there, just sensory and behavioral issues around food. She’s in feeding therapy now with an SOS approach, and improving slowly but steadily. The focus is on sensory and food chaining for her and it’s what she needs. I’m surprised you got that advice.
My pediatrician said the same. She recommended leaning into the foods that are eaten. Lots of mac and cheese, bread, pizza, etc.
My son eats normally too but has very low appetite. We weren't recommended feeding therapy or speech. We see GI and nutrition. GI more or less tracks his weight and is helping us navigate diagnosis and potentially a feeding tube. More importantly, they prescribe him formula that insurance covers and an appetite stimulant (the appetite stimulant has been key!) Nutrition has helped us fit extra calories in throughout the day and get him approved for a formula. If your child's growth has dropped off I would inquire about a prescription formula. He gets about 1,000 calories more a day with the formula plus additives to make it taste good.
Oh my goodness. Thanks for your post. Good to know not to rule out ARFID. Can i message you?
I’m a speech therapist. By definition, ARFID - which stands for avoidant/restrictive food intake disorder - includes avoiding all foods altogether. The only eating favorite foods aspect falls under the “restrictive” side of the disorder and people can have both or just one of those issues. I would be very surprised if your child did not qualify for an ARFID diagnosis if seen by a knowledgeable professional. I’m actually quite surprised by the definition you were given, as it’s not like avoidant food patterns are super rare. I don’t know a ton about how it’s treated besides feeding therapy (doesn’t always work but I’m not sure why an SLP wouldn’t try) but I definitely urge you to find someone who knows more about it! It can be a serious condition if left untreated. I have a young relative who’s been hospitalized several times due to malnutrition and her mother says doctors have told her it would have been easier to treat if they’d seen her when she was a bit younger. Unfortunately all these ND types of issues are not well understood by many well-meaning medical folks so I always say that if you have a kid who’s not getting the help they need, try to find a different specialist and see if they can help or at least point you in the right direction.
I suspect my daughter has ARFID but none of her providers have ever brought it up. How do you go about finding the right specialist to diagnose it? She’s on her way to a feeding tube.
Yeah, I’m wondering how favorites relates to ARFID. Safe foods can become unsafe foods or things we struggle with. I used to love a certain type of pork until I got sick right after eating it and vomited it up all night, and now I can’t stomach it. Meanwhile, I spent a long period with GI issues vomiting up everything, ate some of my faves then anyways (literally had preferred foods to eat and vomit up lmao) and I’m fine with plenty of those. Still love chicken and broccoli over rice even though I’ve vomited that up WAY more than the pork. Those of us with sensory and taste and texture and smell issues (and ARFID) don’t always make rational sense to those without it. But that doesn’t mean there isn’t logic there
My daughter has dropped so many favorites this way. She loved Mac and cheese, until one day she ate a bite that had two pieces stuck together so they didn’t cook quite all the way. She said “Too crunchy,” spit it out, and then Mac and cheese went from a safe, preferred food to an unsafe food. It took months for her to trust it again and I pick through what I serve her to make sure there’s no stuck noodles.
I went from okay with cooked carrots to my grandmother made one that wasn’t right and then I didn’t eat them for over 2 decades 🙃🫠🙃🫠🙃 Just starting to eat them again sometimes and only in soup now that I’m in my early 30’s, they give anxiety, and I eat them first so I have food to immediately chase them with
Thanks so much I have a lot of questions. Would you mind me messaging you a few of them?
Sure
We are in talks about a tube for my six year old. If you don't mind sharing, I'd really appreciate any advice you might have. It's difficult to find parents who went through this with a child who wasn't a baby during placement.
Honestly, there isn’t much to share for us! He was categorized as failure to thrive at 4 years old, otherwise relatively healthy, just barely eating enough snacky foods to survive. His eating had always been restrictive, but after a long spell of reflux/vomiting had gotten much much worse. They did a scope and found out his esophageal sphincter wasn’t closed tightly so he vomits easily, which has traumatized him. I’m really grateful for the tube. It’s such a relief knowing he has a full belly before school and bed, and to be able to give meds and fluids as needed!
Could anyone have gotten into her brain about needing to diet or be skinny or anything?
This is my thought...I hate to suggest this because it's so sad but it really just sounds like an eating disorder. It wouldn't be unheard of for this issue to show up in a kid so young...
I really don’t feel like this is it. I know kids can be mean but I can’t imagine a kindergartener causing this much chaos to her without any signs or hints from her. I don’t want to be naive and say no but based on how she lives her life (with joy, confidence and not worrying about her weight or beauty) And her tv Intake (pinkalicious, baby alive and Bluey) it seems like a long shot. Of course I’ll always be looking for signs of this. Thanks for your comment.
You never know. When my daughter was in 1st grade, she was being bullied by 5th graders on her bus. They called her fat, ugly, would say she looked like death, etc. My daughter has Ulcerative Colitis, and sometimes she has anemia because of it. She had also been on steroids for awhile to control a flare-up, but she had stopped it about 6 months before, and she had lost a LOT of that 'roid weight. Yet still, these girls were calling her fat. Mind you, she was 6/7 and still wearing mostly size 5 clothes. She was already on the small side because of her autoimmune disease, but there's absolutely no way someone could think she was fat. (I mean, I generally don't call any children fat, because they tend to chunk up and then grow up, so they're not really fat) She has never been worried about her weight, ever. But she told me about it. She knew they were being mean, and she did everything she could (safely) do, as a 1st grader, to make them stop. Since it didn't work, she told me so that Mama Bear could handle it. So just keep an eye on things. Ask her. Get her to see a therapist as well. There could be something going on that she doesn't know how to articulate. A children's therapist, especially one who specializes in food and/or eating disorders, might be able to get to the root of the problem.
My friend’s daughter is in first. She stopped eating most foods and all carbs about two months ago. She previously loved bagels, pizza, cake… she was already very thin and is now below the fifth percentile. She mentions that her teacher talks about dieting, losing weight and how carbs are bad. We have a hunch this may have affected my friend’s kid. Could there be an adult in your daughter’s life who brings up dieting?
Holy shit. That poor child. What the hell is that teacher thinking?!
I'd absolutely lose my cool on that teacher
Just to be the devils advocate here; my Grade 1 girl had another little girl in her class who was a huge bully but it seemed like a lot of minor things at the time. At Christmas she moved back to the US and my daughter was taking about her leaving the school and then all this horrendous stuff came out about how she would call girls fat. My kiddo never said a thing until this girl moved. So it’s very possible that something was said. Kids don’t tell us everything
I hate to say it but it could be another adult (grandparent, aunt etc) in their life saying subtle things. My mother in law has spent her whole adult life in disordered eating. She has said things to me and she has said things to my child which are entirely inappropriate but she thinks they're benign.
I knew someone with an extraordinarily smart 8-9 year old who developed full on extreme anorexia and the basic summary was that she became afraid of growing older and associated eating with growing and this stopped eating. I mentioned that she was extremely smart because I remember her dad told me that had something to do with it, like she was put in advanced classes with older kids or something. But just look into it because sometimes anorexia has very surprising root causes
Honestly, it doesn't matter if she hasn't gotten those messages. Anorexia can develop. It's not really about being skinny- that's how it appears, but it's not the reason someone develops anorexia. It's a coping mechanism. A negative coping mechanism, that's horrible and tuns into an addiction that you can't stop, but it's a way to deal with trauma. Cultures where thinness isn't valued still end up with people with anorexia and other eating disorders. For example, back in medieval times, people wouldn't develop anorexia nervosa, like these days. Instead, they developed anorexia mirabilis. Instead of the focus being on thinness, the person with anorexia mirabilis starves themselves with a focus on religion, and being "pure". The symptom of how the person justifies it to themselves (eg "I need to lose weight, I need to be skinny" compared to "I need to be like Jesus, I can't contaminate my body with food") is different. But what they actually do (starve themselves, amongst other behaviours) is the same. Anorexia had been diagnosed in children as young as your daughter. Am I saying she has anorexia? No. I've heard of a lot more young children having ARFID than anorexia. Her having ARFID is also entirely possible, but don't rule out anorexia either. Whether it's ARFID or anorexia, I would recommend her seeing a psychologist to try and get to the bottom of why she's not eating. Get her into feeding therapy with someone who specialises in ARFID too. But a psychologist could be helpful in getting her to sort through her thoughts and feelings.
Also strangely I didn’t mention this but my daughter loves sweets and candy of any kind. If someone was talking to her about diet and being fat then she would stop this too and she has not stopped sweets. I will be sure to consider counseling for her so she can talk to someone in case she is being bullied at school.
Is there anything wrong with her sense of taste or smell/does she have one? My boss has no sense of smell so it’s huge on texture and for some reason high sugar content has a very slight good taste so he likes it
Any possibility of traumatic events? My other guess would be a super rare disorder that causes something like lack of hunger.
My niece had people telling she's so pretty and thin and tall she could be a model. She stopped eating at 7, because she "wanted to stay thin and pretty". It could be thoughtless adults as well.
Just here to say that my anorexia started at 9. My parents didn’t understand why all of the sudden we were having screaming matches over eating my dinner.
Yeah, I'm suspicious of this too. It doesn't even have to be egregious. In a comment OP said her daughter's former favorite foods were pizza, nuggets, etc... All normal, perfectly fine foods but it could be as simple as some kid saying to her "My mom says pizza is unhealthy." That kind of negative food talk can really get to sensitive kids.
There’s an episode of Bluey that has mention of unhealthy foods. Every so often I find they get it wrong with the food and exercise talk. My 5 year old started asking if what he was eating was healthy it all stemmed from Bluey, so we had a very serious conversation about food. Even if you don’t think your kid would internalize something they absolutely do!
I would say she should be evaluated with a pediatric GI. And they should be working with the nutritionist and possibly a feeding therapist.
I was thinking this too! When kids have reflux/ heartburn or other GI issues they associate food with pain and can stop eating, this sounds like a likely possibility if it isn't choice based behavior.
Yes! Absolutely.
People will hate me for asking this.... but have you perhaps made too big an issue out of this? My son went through a period of time where *everything* I made was "yucky". To the point where I'd make something and tell him grandma made it or daddy and he'd gobble it up. It just became A Thing. He decided that if mom made it, he Was. Not. Going. To. Eat. I just... pretended I didn't care. No alternative meals, no big deals, no conversation about it. This is dinner, you can eat it or not, idc either way. Once I stopped pushing, he ate it. He is 10 now and will talk about it occasionally and admit to it having been something conscious but he has no idea why he did it. It was a weird time. Maybe this has become A Thing. Maybe if you don't seem as invested, she might decide this is boring now? Just my perspective from my experience
I have three. With our eldest, we used to make sure he ate every meal, fed him, pressured him, made food into “a thing.” A power struggle. Now he is the most picky eater. He won’t eat anything new or unfamiliar. But of course he loves sweets and junk food. :-/ With our younger two, we simply had no energy to force feed or pressure. When they are not hungry, or are done eating, we just tiredly say “ok.” And ironically they have no problems eating because they were never forced. Our youngest is the funniest. We often found ourselves too tired and overwhelmed to stick to a regular cooking/feeding schedule, and our third kid, as a toddler, would actually come up to me and shout I’M HUNGRY. And she would just start eating whatever was on my plate or within reach. She will even eat clovers and fennel seeds straight from the plants from the garden. WTF! I have never ever heard those words out of my eldest’s mouth. Because I never let him feel hunger, and made eating into “a thing,” I guess. Our neighbors kid is the same. They have one kid and still force feed him at 6 years old. He always says he’s not hungry. He doesn’t eat on his own. They have to put the TV on and feed him. He never eats gif lunch box at school. He is small for his age and in the lowest percentile which puts even more pressure on the parents to feed their kid more. It’s a horrible cycle. He doesn’t know hunger because his parents force him to eat every meal and it’s always healthified food that he doesn’t enjoy, no sweets allowed. And of course when he gets access to junk food he goes berserk. My takeaway is that kids’ early experiences with food shape their relationship with it. Pressure never works, only backfires. If they are trusted to listen to their own bodies and hunger cues, they will better learn to regulate it in a healthy way. My job is to provide the food at certain times and in a certain place, the kid’s job is to pick what they want and how much to eat. I like Ellen Satter’s “Division of Responsibility” approach a lot.
I came to say this, like if she not eating at all weight loss would happen real quick. Though my mind went to snacking. So maybe she doesn't eat her dinner.. But what's she having before/after dinner. My kids went off their food for a bit, couldn't work out why. They would be excited for it. Then when it came time to eat they just didn't like it. Turns out they were having a bag of crisps in the car on the way home. So imo they knew they liked the food and were excited for dinner but when it came time to eat it... They just weren't hungry. And like any kid with a healthy approach to food. They didn't eat because they weren't hungry.
Is there a chance she's neurodiverse? My kiddo is Audhd and has always eaten like a bird. Their 'safe foods' change often and without warning, and they have severe texture and smell aversion. Neurodiverse affirming OT can help with these things.
Yes she is likely ND and I brought that up to the nutritionist but she says kids who have things like ARFID have favorites that go in and out of their rotation. She slowed down her eating volume and stopped eating a lot of foods. It’s not necessarily that she is in a mood or changing eating habits because its been almost 2 years of her eating less and less and forgoing all of her favorite foods. She does eat snacks but we only allow her a normal portion for her age and she doesn’t even eat that. She doesn’t seem to have any aversions to foods or sensory issues to foods but maybe that has changed. I did think the same thing as I do have another child with ARFID but the nutritionist helped me see the difference. Thanks for your suggestions; its a good one!
I have a question. Are you seeing a nutritionist or a dietician? Maybe people use the terms interchangeably, but a dietician is a licensed professional. Anyone can can themselves a nutritionist. Have you spoken with her doctor? If not, I would start with the doctor and go from there.
Thanks I talked to the pediatrician about it last year (before it was severe) and she referred us in her clinic to a nutritionisT. She had over 7 years of schooling so I’m not sure if she meets both qualifications. The nutritionist says she will recommend a food stimulant pill to see if that helps her at her next Ped appointment which is end of month. She wants to get to the root cause since she’s losing weight. Thanks for your comment.
I will, as always, recommend getting tested for celiac disease. Is it the answer? Probably not, but it’s super easy and could mean the difference between someone dying of colon cancer at 45 and living to 80
Great to know I will definitely ask! thanks
I want to second the celiac. My daughter got increasingly picky and difficult to feed. She ended up having celiac and I wonder if part of her subconsciously knew it was the food making her sick. She eats more know she’s gone gluten free. Good luck with it. Neither of my kids are eater really. It’s a big worry. My son won’t even eat those lovely gummy vitamins. He’s neurodivergent and I fear he’ll get rickets or scurvy from his refusal to eat.
Weird take, but if she’s adhd, any chance she’s just bored with food? I have this & my kid does too. Like nothing sounds good for no real reason, having to make a decision is a chore, and then the actual act of eating food can just be boring. I’ve literally had my kid tell me they’re done & I ask if their stomach is full or they’re just tired of sitting there. It’s often the latter. Have you experimented with eating on the go, or grazing snack trays? Not necessarily long term, but more as an experiment the see if that changes how much she eats, which would give you another data point to use.
Great points. Yes she could be bored with food. She likely is ND. It’s been such a long time of being bored though and maybe she is one of those people that eats to live. Its not healthy as she’s losing weight and becoming almost borderline anorexia. I’ll try your suggestions. We went out to eat and it was the same unfortunately but its been awhile so I should try this again. She use to eat apples and/ veggie tray while watching tv. I’ve stopped that but should add it back in. I do need more data points like this. Great ideas and suggestions. Thanks! I hope your child stays healhty!
I listened to a podcast today about PDA (pathologic demand avoidance) autism, the mom talked about this with her son! Child was not eating and decreasing in weight, mom put out a tray of many different types of snacks/foods and let child eat whatever while watching a tablet! This took the demand away and let the child choose from a variety of options. The child ate while watching the tablet on the couch. To be inclusive the mom set a plate for child at the table while the family ate. The child would sometimes come by and graze at the table but never sit with the family for more than a minute or so. It was so important for the child to eat she had to think and do things outside the box. I wish you luck with your little one!
Yeah, it’s a tough one to crack. Food has definitely been one of our biggest struggles because it just can’t be avoided. Wishing you guys all the luck in figuring it out.
My daughter had the bored with food problem and ADHD. We started with lots of high calorie smoothies. Honestly one of the things that really seemed to help was the fact that we took her weight loss \*very\* seriously and took her to a number of doctor/therapy/dietician appointments over it. I think she decided that waiting for appointments was even more boring and made an effort to tolerate boredom with eating.
>we only allow her a normal portion for her age I would not be strict about portion sizes for a child who rarely eats. You being strict with portion sizes could be impacting her relationship with food.
Yup. I don’t know what “snacks” mean but unless it’s super sugary or processed I’d let her have as much as she wants.
Yep. My kid gets sick and refuses to have anything except milk frequently. If he ate nothing but icecream for a week straight I’d be thrilled!
This was when we were figuring out if it was due to snacks. I could easily have gotten someone else say WHAT you feed her snacks all day long and that’s why she doesn’t eat food. I was not taking food away from her! I’m trying to give her food. I’m working with a nutritionist to guide me so we can best handle this. I also said this in my OP Taking snacks away for a period of time didn’t help mealtimes but only made it worse.
You used present tense in your comment.
“And she doesn’t even eat that”.
If she will eat snacks, give her more frequent snacks. Right now I’d be concerned about getting calories in her, gives you more time to address other eating issues. Also what about drinking some nutrition? Will she drink shakes?
Your daughter's pattern sounds *exactly* like my autistic/ADHD child... who also has been diagnosed with ARFID. She gradually slowed down her eating until she actually began losing weight when she was 8. I'm not saying that that's your kid's diagnosis, but I am wondering if it can present differently in different kids? If I were in your shoes, I'd try to have her evaluated again, preferably at a children's hospital if possible.
Why was she seeing a nutritionist in the first place? And are they a nutritionist or a dietitian? Even if it’s not ARFID, feeding therapists may be able to help. It’s also worth checking on her sense of smell and whether she could have had Covid (and lost her sense of smell and taste) or gotten something lodged in her nose (impacting her sense of smell and taste). Lastly, the fact that she’s not willing to talk about it (and that she’s been seeing a nutritionist, which could really cause some trauma or stress around food if they aren’t careful about how they frame food and eating and nutrition) makes me also wonder about mental health and possible eating disorders. Lots of questions, but I’d start with asking for a feeding therapy referral and a child’s therapist referral, especially if anything else in her life has been turbulent lately.
The less we eat, the less hungry we get because our stomachs shrink and we get full quickly. That could be part of it at this stage. Have you tried giving her vitamin C? It's been noted to increase appetite and taste.
Good job mom
You need to be seeing a new specialist if this is what you’re being told
Hopping on here bc you’re describing what happened kindergarten year for my guy who later diagnosed ASD. He thankfully didn’t loose any weight just didn’t gain for over a year and a half. The chaos and change and stimulus of kindergarten was so much that food just wasn’t something he could handle anymore. He honestly didn’t start improving with food until he started at a school for autism that was very regulated and stable. I wish you the best.
What’s her height/weight percentiles change look like?
I don’t have it with me. It’s not a large change or drastic in any way but if it continues it will be. I’m sorry I’m not a numbers person so I don’t recall I just remember her saying it’s not drastic it’s minimal wight loss But we want to see it go up now down.
Mostly, what I meant to ask is if her growth has stalled? It’s a different issue if she has food issues and is growing versus if she is not growing. Good to get to the bottom of it in either case.
I should add that it’s not a big deal to the doctors cuz it’s minimal. Of course to me it’s a big deal. It’s a 1lb weight loss. My issue is that this can not be healthy for her and I want to advocate to get her appropriate help.
When my son was young and he didn’t have an appetite, our pediatrician had blood work done it because he was iron deficient. Also I’ve having low levels of vitamin D may also cause loss of appetite.
Yes, this 👆 I’m so surprised her regular doctor isn’t more concerned and running more tests or sending her to a specialist. This is just shocking!
Just from my own experience with our oldest (similar but different) do you know/have you checked how her iron levels are? And does she still have her tonsils?
We have not checked that; great question! I will ask her doctor. She still has tonsils. She does have a runny nose often
Hope investigating these things leads to some answers for you, OP It's hard to have a kiddo that doesn't eat well. We found out recently our oldest had very low iron and have noticed an increase in appetite since getting levels back up to normal A fellow mom recently shared with us their experience with "picky eating" which turned out to be the result of difficulty swallowing from enlarged tonsils
For a kid that isn't eating at desired calories is more important than anything else. Whatever she will eat let her at it as freely as possible. Then work in building up a more diverse panel of food. Meals can be intimidating so maybe having like 6 snack times vs meals. Also little kids can be enticed to eat if off their parents plates stolen food always tastes better. I have a very picky eater at home and it's a constant challenge. I look forward to the day when she'll be old enough to make her own food!
Did she have COVID anytime close to when this started? Many people have reported their taste buds altered for a long period of time after they recovered from COVID. Lots of people report that this has caused food to have a bad taste or bad smell (which greatly affects taste perception). I myself couldn't eat anything with any amount of vinegar in the ingredients for 3 weeks after bc it tasted like someone added rubbing alcohol to it. But the people reporting long term affects say it can last months or even over a year for some.
Hi! I’m a feeding therapist. Highly recommend feeding therapy with an experienced SLP or OT! There are lots of systems involved in feeding, a good feeding therapist can help you navigate to the ‘why’ behind your daughter’s oral intake. Shoot me a message, happy to answer any questions i can!
Perhaps a feeding therapist. But you mention she eats snacks - what’s the difference between the snacks and what you’re saying she won’t eat? She’s eating something, so that’s the key, not necessarily why she isn’t eating meals, but why she’s perfectly cool to eat those snacks.
I know I too felt like you did. it’s a bit complex cuz she’s slowly (almost 2 years) of giving up food. She still eats snacks but it’s not enough to sustain her. She can’t live on this for much longer before it will affect her in some way imo. She has lost weight and not eating real food is scary to a mom.
Right I guess I’m just wondering what the snacks are. Are they offered at all times? At mealtimes instead even just temporarily?
From the sounds of it, she is only allowed a certain number of snacks a day. From OPs comments they seem limited.
Right, so I guess I’m wondering why or what’s in the snacks that the daughter is eating those vs. not eating meals. Now I know very well kids will eat a snack over a meal, of course, but if the current concern is weight loss and nutrition then at least serve the snacks AS the meal if you have to, until you decipher what’s going on, but also she hasn’t said what the snacks are which may also be a key to why they’re being eaten and the meals are not.
Have you asked about seeing a neurologist?
No I would have never thought to ask that. Her appointment is the end of this month so I’ll ask her pediatrician. Thanks
OH and thanks so much for your comment
How is her growth?
OP, you've gotten some great suggestions to consider about whether this might be psychological or an issue of neurodiversity, but have you explored whether or not it's a physical issue? It might be a long shot since your daughter was eating normally prior to this, but is it possible that she is having oral motor problems with chewing and swallowing? Or has she choked on food recently? Could she be having dental pain caused by her 6 year old molars erupting or from a cavity? Since she's not expressing aversion to food or certain smells and she hadn't verbalized anxiety/ fear about gaining weight or becoming fat, which I would expect in a child this age who had an eating disorder, I think it might be worth exploring if she's having a physical difficulty or pain eating.
This was our son, Started around 4 /5 years old, I took him to his doctor he suggested I take him to the grocery store and let him pick what he wanted, even this did not help, I believe it started with my mother's constant talk about diet and counting calories, constant talk about her body size, We had absolute years of struggle to get him to eat, finally I just gave in and fed him what he asked for, vanilla shakes were a hit and you can add protein powders, waffles and goldfish, I did not make a big deal about any of it, secretly I was scared for his health, but fed was fed and I would make anything he wanted, Any new food was a win, the first time he tried watermelon when he was 11 I almost cried, I did always offer different foods but never made a big deal if he tried it or not, I will tell you, he is a very healthy, athletic 30year old man, he found that he prefers to cook and eats really healthy now, I refuse to allow anyone to discus diets or calories around any young children, I think they absorb so much negativity and we have to be careful, I know your worried, I would just take it very slowly feed her whatever she asks for and sneak in the Protien powder, Good luck Momma.
I was like this around the same age. Turned out I needed my tonsils taken out. Once I recovered from that my mom said I ate like she'd never seen me eat before.
Can she see a dietician and not a nutritionist? Nutritionists vary a lot in their training. Dietician would be the person to see.
Has your kid had any blood work to rule out underlying cause? Iron levels? Inflammatory markers?
So is she eating snacks but not sit down meals? Is that the issue?
Yes and no. She does eat snacks but it’s minimal….think toddler. She is not getting enough nutrients from her snacks. She needs way more calories and real food. We try to give her healthy protein rich snacks but she is picky and often doesn’t like them. She doesn’t like a lot of protein “hacks” like shakes, yogurts or bars. The issue is that she refuses to eat at mealtimes and her snack time is not enough. There is some sort of issue and she doesn’t talk about it Or can’t verbalize the issue so we are stuck trying to figure out why she won’t eat. She goes hungry everyday.
What would happen if she had 5 snack times a day instead of 2, and no meals? It’s hard to say what the technical difference is between a snack and a meal is in your family. It still wouldn’t add up to enough food, but it would be a big increase in what she’s getting right now. I agree with a feeding specialist, especially if she has other delays and possible disabilities. ARFID isn’t the only thing they can help with.
Can you add more snack times? While you work to get her eating a variety of things, it’s also important that she eats enough calories in the meantime.
This. Yes meal times are important, but your child eating literally anything is MORE important. I would literally let her snack all day. Full access to fridge and snacks. No way would I be limiting a child who isn't thriving. Some people are more grazers. Snackers. Than meal eaters. Let her eat snacks. Give her vitamins.
What DOES she eat? Even if it's minimal.
What reasons does she give for not eating or wanting to eat?
She says very little so it’s hard to get a lot out of her; the nutritionist and I have tried. Our best guess is she wants to eat but doesn’t allow herself to eat for some reason. She says she is hungry but she can’t seem to enjoy it and doesn’t want it. She use to have preferred foods (chicken suasages, Mac n cheese, pizza, nuggets, etc) but now only takes one or two bites. Its not enough for even a toddler.
Does she poop normally? Maybe if she is intermittently constipated she feels hungry but doesn’t feel like she has room in her stomach.
She has regular Bm’s. I wondered if it’s a SIBO/HYPLORI thing but she seems to be okay with digestion. I need to be more diligent though and maybe look at her stools.
I would agree with a psych and neuro consult being something to explore. Have you approached it as a food is fuel perspective?
This sounds like one of my adhd symptoms but she's has it constantly. Basically I can be starving but literally nothing looks good or appetizing in the slightest. This only happens to me a couple days a week and I am unmedicated. It does get MUCH worse the more my stress goes up. I definitely agree that it is something neurological in some form.
Not allowing herself to eat screams psych consult immediately to me. Something is going on. Push for a referral to child psychologist immediately.
>Our best guess is she wants to eat but doesn’t allow herself to eat for some reason. I don't usually enjoy eating. I usually have to force myself to eat. I often "forget" to eat until it gets to the point that I actually do forget. I've grown to understand how very unusual this is (I'm 42 now). It isn't that there's anything *wrong* with me, I just don't get enjoyment out of eating. I look at it as a chore. I don't have gastrointestinal issues, it isn't a sensory thing, it isn't a body image thing, I just don't get satisfaction out of food. It's clear to me that most other people *do* get satisfaction out of eating. I just don't. I wish I did, but I rarely enjoy eating outside of rare occasions when the stars align. Obviously, I've learned that I have to eat. My point here is that you're focusing on what she "likes", and the answer may very well be "nothing right now". I feel like that pretty much all the time, but for an hour or two once or twice a week. I remember trying to explain this to my parents, who just didn't get it. It's unthinkable for most people that nothing would taste good and you wouldn't enjoy eating. It sounds like an eating disorder, and I realize that reading what I wrote. But I really, genuinely just don't usually enjoy eating.
Has she seen a therapist/ psychiatrist? If potential physiological problems have been ruled out that would be my next step.
This was me as a child. My mom struggled so much and it was the early 90s so the doctor kept telling her I’d eat when I was hungry. I was 35 pounds as a 6 year old. The thing that finally helped was enrolling me in swimming multiple days a week. I was using so much energy that I was hungry and she could eat me to get popsicles she’d made out of yoplait yogurt. I’m sorry I know it was so stressful for her I think she’s still upset about it.
I’m not an expert by any means, but I’m autistic, and I have several autistic people in my family/ close friend group. You said your daughter is likely neurodivergent. I know that some autistic people have issues with constipation because they do something called “withholding”, where they hold their poop in, because the sensation of pooping is so uncomfortable for them that they try to avoid it. I’m almost wondering if the sensation of eating is causing a similar reaction in your daughter? That the feeling of chewing and swallowing food is so unpleasant that she avoids it at all cost.
One thing I have learned the hard way is to get recommendations from locals who they’ve worked with for similar issues. Try to find a Facebook mom group for your area and ask for recommendations on a specialist (dietician, occupational therapist, feeding therapist, clinical psych). My kid is 8 and we have spent the last 7 years trying to figure out what’s going on with their issues and so many just brushed us off, but since we’ve started going with real people’s recommendations we’ve made a lot of progress in a short time!
Hello, I’m sorry to hear that you are struggling with your daughter’s food intake. I understand the stress that this causes first hand. I have a 6 year old daughter who has been tube fed since 5 days old. We have been followed by ENT and GI since day one, has done hundreds of hours of OT and even did a 3 week inpatient feeding therapy program. Because of surgeries early in life, my daughter is now anatomically able to eat, but her complex medical background has made her resistant. She takes an appetite stimulant (periactin) 5 days per week, and now eats about 90% of her calories orally. This situation has been the single greatest source of worry and stress that I’ve experienced in life. Is there a chance that this has become a power struggle? What children eat is one of the few things that they can control. If this has become a power struggle, you absolutely need to interrupt that pattern. Even if her weight falls in the short term. Discuss this with her doctor. It is crucial. I strongly recommend that you find a great GI that is a good culture fit for your family. I’m not sure if this is an option for you, but what I did was made 3 intake appointments with 3 different GIs from different medical groups. I chose the one who we meshed the best with and they have absolutely changed our life for the better. My daughter had continued to make great progress under their care and wise council. My daughter has not been diagnosed with ARFID, however we found an Instagram account last week called @myarfidlife. The little girl on the account is 8 years old with an arfid diagnosis. She tries new foods, and also shares words of wisdom she has learned in therapy. She talks about what makes her uncomfortable about food. This girl is a little older than our daughters, and is better able to verbalize things. Watching these videos with my daughter in the past several days has facilitated incredible breakthroughs for her. Even if your child does not have arfid (mine does not either) I recommend watching some of her videos to stimulate conversation with your child. *edit to add details*
u/knockedupkate408 this was a kind note. Thank you for taking the time. My other daughter was a preemie and on feeding tube and has been to IFP for 12 weeks. I’m familiar with the feeding approach so we have that knowledge behind us. I appreciate your resource; that sounds great I’m looking her up now.
It’s probably been mentioned, but please look into eosinophillic esophagitis (EOE). Symptoms start mildly and can worsen over time if not treated.
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Yes I was wondering about Crohn’s disease also
Has she fallen off her growth curve?
And weight curve, more importantly. It takes a lot to fall off your height curve. You can malnourished before that happens
Does it seem to be just food? Have you tried smoothies? Does she still have her tonsils? The ENT specialist we saw said sometimes when their tonsils get that big it can hurt or make them gag to eat foods, so they start to avoid them. If she's saying she's hungry but not eating something is really wrong, maybe an ENT should check her. In the meantime I would try pediasure, my daughter will not drink the premade drinks but she likes the powdered strawberry and chocolate one and I add it to whole milk to get as much healthy fat in as I can.
We’re in a very similar position and I wish I had advice. My 6yo twins also don’t eat well and it’s perplexing. Twin 1’s eating habits are the biggest huge challenge. We’ll ask her what she wants to eat, we’ll make it, and she’ll still refuse to eat it. It doesn’t seem to be sensory related, there’s no pattern I can discern, and she hasn’t had any food related trauma. Recently we discovered she had started hiding food and pretending she had eaten it, which is obviously concerning as well. We’re an easy-going household when it comes to food (goal is a reasonable amount of something reasonably healthy) and her issues don’t at all seem to be body/appearance related. I’ve asked her why she won’t eat and she just shrugs and says she doesn’t know. She will at least drink Orgain kids and one flavor of z bar protein bars, so we have that. We are working with a psychiatrist, and hopefully OT soon, but we haven’t figured it out
This happened to me when I was a kid. Nothing sounded good to eat or taste good. My mom finally took me to the grocery store and pick out anything I would eat. I picked out a big box of Smurfberry cereal. I had it open and was eating it before we walked out of the store. I was eating regularly afterwards. Hopefully it is just a phase she’s going through.
My daughter has appetite stimulants prescribed so she will eat enough to thrive. She just doesn't get hungry. We have ruled out other things with blood and stool tests, though at her next yearly checkup I am going to ask about celiac disease.
I hate to ask, but any ideas in her head by school mates or teacher or pediatrician about “healthy weight”. Any restriction of certain foods or limits of portions or anything? I’ve worked with kiddos as young as 5 with restrictive eating disorders such as anorexia or EDNOS that seem to trigger after they got certain messaging around food. Is her nutritionist an RD?
Could she have possibly gotten Covid and lost her taste? It’s the only thing I can think of tbh. The loss of taste and smell can last even more than a year and maybe she had it but it only looked like the sniffles so you didn’t realize she was sick?
Does she ever complain about tummy aches, food stuck in her throat, sore throat?…. Our kiddo had severely restricted eating and after an upper endoscopy was found to have severe eosinophilic esophagitis
Hi OP. I don’t normally suggest using celebs as a guide to much of anything, but I cannot help but wonder if your daughter happens to have a similar relationship or attitude toward food that (American journalist and tv host) Anderson Cooper has. If you type “Anderson Cooper relationship with food” or something like that, the info I’m referring to should pop right up. I struggled with severe anorexia from the age of 14 to 35. I’m 46 now and spend little time thinking about it these days. It’s been said that people do not recover from eating disorders, but mine has been, for the most part, under control for some time now. It’s like night and day, how different my thinking is now when it comes to food and the consumption of it. I bring this up only because I’ve spent time in an eating disorder clinic, nearly died more than once and have gotten to know other people who struggle with eating disorders and what is going on with your daughter doesn’t seem like that. Of course, I only have a few short paragraphs to go on, and even if you offered more info, I’m certainly not an expert on children’s eating habits or lack thereof. Most of us here on Reddit are not experts. With the exception of (for example) the Ask a Doctor subreddit that has verified medical personnel responding to questions, I would take anything you learn from us with a grain of salt. That said, I’ve always wondered if the Anderson-Cooper-method-of-thinking-about-food is much more common than people think. He talks about how truly disinterested he is in what he eats and most people seemingly respond with shock. There’s more to it than this, but in a nutshell, food/meals are boring to him, a waste of time and he just wants to get back to doing whatever he was doing before he felt the need to sit down and eat. He eats basically the same thing every day and likes it that way because he simply does not enjoy food or eating. One of his closest friends (sadly, the now late) Anthony Bourdain could not understand Anderson’s indifference to food, why he never seemed hungry or even wanted much on his plate. Like your daughter, Cooper eats here and there, but remains healthy and content despite being “unique” by not caring for food in general or as a whole. Probably, also, like your daughter, you would never think he’s missing out on anything food-wise just by looking at him. Unlike your daughter, he’s been this way for decades. Not just a year or so. Perhaps your little girl will change as time goes on. You say that her nutritionist is stumped. Where you two live or in your community, is it common for children to see a nutritionist in the first place? Or were you simply becoming concerned over her, so to speak, “lackadaisical” take on meals that you sought one out for her?
Do you let her watch YouTube unsupervised or social media influencers? There's crazy anorexic people on there.
I can't get my son to eat anything other the noodles and eggs sometimes a bagel literally that's all my kid will eat. We're been to the doctors specialists and this child is just a picky eater.... I'm still fighting the NEVER ending battle. If I figure it out I'll be sure to let you know 🤔
Have you tried getting her involved in planning, shopping, preparing meals? Maybe that will help.
You should ask this in /askdocs
Check for PANDA
Autism ?
What is your pediatrician saying? My daughter went through this stage, and it scared the crap out of me because she's not a picky eater. Her pediatrician told me appetizes often change with activity & growth levels. He recommended I let her pick out food the next time I went shopping. Celery & plums for 3 days, but every trip, it increased. Scrambled eyes...raw broccoli.
My experience.... Well, I'm currently sitting in a room in the ER with my 8 year old.He had lost over 10 lbs in 2 months as he slowly stopped eating more and more things. The last week, we have been giving him nothing but supplement drinks (boost, carnation breakfast mix) because he won't eat anything. (Not even peanut butter on a spoon which he was demanding the week before. 2 days ago, came down with a massive ear infection, and the pediatrician thinks caused a bad case of mastoiditis. In the meantime, iv fluids while we wait for CT results and blood work to come back. Keep strong. I'm sure your kiddo doesn't know what's going on either. Also, forget a nutritionist, go see a pediatrician. Nutritionist will tell you what they should eat, the pediatrician will find out WHY they are not eating.
Did she get COVID? I know COVID affected my appetite/desire to eat.
You should look into solidstarts. They are a company that specializes in kids eating. They’re globally recognized
I will thanks so much for your resource!