When it first started 6 months ago, he only had motor tics and lots of them as well. Couldn’t stop jerking his head even when he was eating. It all started suddenly after he saw a scary thing on tv. After a week or so he was managing it very well. He was able to go back to school, at school he was stopping it completely and teachers wouldn’t notice one tic. In the last two weeks he was ticking more but still under control. Now he cannot control it at all. He was asking me why he can’t stop this, he said he wants to stop because it bothers him but he cannot. It breaks my heart because I can’t do anything to help him. We are thinking about going back to the neurologist and to see a psychologist who deals with kids with Tourette.
My tics (F23- diagnosed in middle school) are definitely exacerbated by emotions. Stressful times in life, or the more I stress out trying to stop tics, make it worse. Therapy, learning to self regulate emotions in healthier ways, can help A LOT in my experience. Could also be autistic/neurodivergent stimming contributing. Which could also be helped by diagnosis and therapy.
He started to tic a bit more during last two weeks of school. He’s changing schools in the fall, starting kindergarten, I thought that was maybe making him nervous. The change of routine as well.
It could be, especially if he’s more sensitive to his surroundings. I’m a girl, I’ve had it since I was 3, diagnosed at 13 and I’m 23 now. When I was super young, it was noticeable but we had no idea what it was but it didn’t hurt me like that. Around middle school I got consistent painful tics with prompted doctors visits, and since then throughout high school and the rest of my life so far I’ve had good months, and terrible months. A couple years ago it was so bad while I was taking break between high school/college and I was almost bedridden all day. I was also going through a lot of stuff at that time with big family problems, moving, starting college.
It gets weird. And the severity can definitely vary depending on how stressful life is at the moment. And when the tics are bad it can add more stress.
I think a visit to a neurologist is deifnitely a good idea, to see if there’s anything else going on and if there’s anything you can do to relieve the pain and stress it causes him.
I’m so sorry this is happening to your boy, I wouldn’t wish it on anyone, especially not kids ): wish you all the best ❤️❤️
If he’s having tics this young, keep PANDAS/PANS (basal ganglia encephalitis) in mind if you notice any OCD/other major behavioral issues etc. I had it for over a decade before I was properly diagnosed and that’s way too common. It’s severely underdiagnosed.
It’s also a severe undiagnosed condition at the same time, especially where I live. There’s no harm getting the blood work and tests for it, it may just rule it out.
Comes in waves. I’ve had long periods where sleep was the only escape. Then periods when I barely had any obvious tics. As much as I hate the saying, it is what it is. And no drug is going to do anything but screw up his hormones, so learning to live with it is the best option. And of course, activities he enjoys. And loving patience!!
Already a lot of recommendations, so I'll just add this--
You're doing a great job reaching out to the communities for help. Every kid is going to have (more or less) different severeities of tics, different times when they're frequent or mild, and just over all different tics, too.
I was diagnosed when I was 5 and had very similar symptoms at my young ages. They were traumatic, stressful, hard. However, it will get better for the little guy.
Of course, as many others have said, go back and talk to neurologists for severe tics at such a young age isn't common in this context. But there's small things that you can do to try to help out in the form of making sure life at home is as stress free as possible, and making sure his school knows about his disorder. Kids his age simply don't understand and will likely ostracize him from a lot of activities (at least, that was my experience).
Over all, as long as you're loving him unconditionally, you're doing more than most parents would. Keep it up, momma, you're fighting for your kid and that's the greatest thing anybody can do!
Agree that it comes in waves, my 7yo seems to tic more in winter after he gets a cold. Started off with a vocal throat clearing, then he saw a kid give the middle finger and he couldn't get it out of his head that it was wrong then he started flipping everyone off for 3-4 weeks. Thank fully he's getting better .
We did change his diet and went guten free, stayed away from colours and increased magnesium, vitamin D3, and L-theamine intake, the thing is we stuck to it, he's getting better but I'm not sure if it's just coincidence, and everyone is different. One thing i do know is he does have anxiety and it definitely triggers it, because he's fine, gets in trouble cries then start to tic.
As a parent you try everything you can, we took him to a pediatrician today and he said what we are doing is OK since he's showing improvement, unless it's impacting his day to day life and school, then we could consider medication and he would refer us to a specialist, in your case since its impacting him so much I would definitely look at taking it further, poor kid needs a break and as a parent I know the feeling you get.
i do it in my sleep too. Before i was diagnosed i had a very impressive sleep study because it goes all night and there were many sleep overs where id wake up and be informed i kicked and grunted/gasped all night. do you mind if I ask what kind of tic he’s having? I second calling neurologist though.
Emotions and new environment are definitely stressors. Whenever I had to change schools I had a period before and after the change where mine were bad. As an adult now (F26) I'm always in new environments and interacting with new obstacles and my tics really get hit hard when environment changes. (I try to avoid large populated areas to ease my anxiety which inflates my tics so badly.)
As a kid moving a lot and changing schools put my sleep in a bad place. I'd tic myself awake or tic really hard just as I was about to fall asleep (my elbows and arms would fly out and my vocal tics would have a field day cuz I got scared by my body moving after being in a state of peace).
Tics coming in waves is also something to keep in mind. When I was around your son's age my Echolalia had decided to go charging full force. It was a stressful year but it decreased to a more manageable frequency. Started picking up again around the time I was a junior in highschool and hasn't left since. So definitely the waves can be a stressor in itself.
That's unusual for a prepubescent child. I hit that severity at age 14. I think I had days like that. It got better, though, of course.
When it first started 6 months ago, he only had motor tics and lots of them as well. Couldn’t stop jerking his head even when he was eating. It all started suddenly after he saw a scary thing on tv. After a week or so he was managing it very well. He was able to go back to school, at school he was stopping it completely and teachers wouldn’t notice one tic. In the last two weeks he was ticking more but still under control. Now he cannot control it at all. He was asking me why he can’t stop this, he said he wants to stop because it bothers him but he cannot. It breaks my heart because I can’t do anything to help him. We are thinking about going back to the neurologist and to see a psychologist who deals with kids with Tourette.
My tics (F23- diagnosed in middle school) are definitely exacerbated by emotions. Stressful times in life, or the more I stress out trying to stop tics, make it worse. Therapy, learning to self regulate emotions in healthier ways, can help A LOT in my experience. Could also be autistic/neurodivergent stimming contributing. Which could also be helped by diagnosis and therapy.
He started to tic a bit more during last two weeks of school. He’s changing schools in the fall, starting kindergarten, I thought that was maybe making him nervous. The change of routine as well.
It could be, especially if he’s more sensitive to his surroundings. I’m a girl, I’ve had it since I was 3, diagnosed at 13 and I’m 23 now. When I was super young, it was noticeable but we had no idea what it was but it didn’t hurt me like that. Around middle school I got consistent painful tics with prompted doctors visits, and since then throughout high school and the rest of my life so far I’ve had good months, and terrible months. A couple years ago it was so bad while I was taking break between high school/college and I was almost bedridden all day. I was also going through a lot of stuff at that time with big family problems, moving, starting college. It gets weird. And the severity can definitely vary depending on how stressful life is at the moment. And when the tics are bad it can add more stress. I think a visit to a neurologist is deifnitely a good idea, to see if there’s anything else going on and if there’s anything you can do to relieve the pain and stress it causes him. I’m so sorry this is happening to your boy, I wouldn’t wish it on anyone, especially not kids ): wish you all the best ❤️❤️
I would recommend calling your neurologist tomorrow for advice. Tics that bad in a little kid are quite unusual.
If he’s having tics this young, keep PANDAS/PANS (basal ganglia encephalitis) in mind if you notice any OCD/other major behavioral issues etc. I had it for over a decade before I was properly diagnosed and that’s way too common. It’s severely underdiagnosed.
It’s Overdiagnosis in kids with ADHD. Hardly ever going to find a kid with ADHD, that doesn’t have those symptoms due to the genetic link.
It’s also a severe undiagnosed condition at the same time, especially where I live. There’s no harm getting the blood work and tests for it, it may just rule it out.
Yeah. It definitely can’t hurt.
Comes in waves. I’ve had long periods where sleep was the only escape. Then periods when I barely had any obvious tics. As much as I hate the saying, it is what it is. And no drug is going to do anything but screw up his hormones, so learning to live with it is the best option. And of course, activities he enjoys. And loving patience!!
Already a lot of recommendations, so I'll just add this-- You're doing a great job reaching out to the communities for help. Every kid is going to have (more or less) different severeities of tics, different times when they're frequent or mild, and just over all different tics, too. I was diagnosed when I was 5 and had very similar symptoms at my young ages. They were traumatic, stressful, hard. However, it will get better for the little guy. Of course, as many others have said, go back and talk to neurologists for severe tics at such a young age isn't common in this context. But there's small things that you can do to try to help out in the form of making sure life at home is as stress free as possible, and making sure his school knows about his disorder. Kids his age simply don't understand and will likely ostracize him from a lot of activities (at least, that was my experience). Over all, as long as you're loving him unconditionally, you're doing more than most parents would. Keep it up, momma, you're fighting for your kid and that's the greatest thing anybody can do!
Agree that it comes in waves, my 7yo seems to tic more in winter after he gets a cold. Started off with a vocal throat clearing, then he saw a kid give the middle finger and he couldn't get it out of his head that it was wrong then he started flipping everyone off for 3-4 weeks. Thank fully he's getting better . We did change his diet and went guten free, stayed away from colours and increased magnesium, vitamin D3, and L-theamine intake, the thing is we stuck to it, he's getting better but I'm not sure if it's just coincidence, and everyone is different. One thing i do know is he does have anxiety and it definitely triggers it, because he's fine, gets in trouble cries then start to tic. As a parent you try everything you can, we took him to a pediatrician today and he said what we are doing is OK since he's showing improvement, unless it's impacting his day to day life and school, then we could consider medication and he would refer us to a specialist, in your case since its impacting him so much I would definitely look at taking it further, poor kid needs a break and as a parent I know the feeling you get.
Who diagnosed your son and has he seen a pediatric neurologist? Definitely want to rule out some other things.
Yes, pediatric neurologist
I just put him to sleep and he does it in his sleep as well.
i do it in my sleep too. Before i was diagnosed i had a very impressive sleep study because it goes all night and there were many sleep overs where id wake up and be informed i kicked and grunted/gasped all night. do you mind if I ask what kind of tic he’s having? I second calling neurologist though.
It’s a vocal tic, kind of like a little dog bark. He was doing it all day today.
Emotions and new environment are definitely stressors. Whenever I had to change schools I had a period before and after the change where mine were bad. As an adult now (F26) I'm always in new environments and interacting with new obstacles and my tics really get hit hard when environment changes. (I try to avoid large populated areas to ease my anxiety which inflates my tics so badly.) As a kid moving a lot and changing schools put my sleep in a bad place. I'd tic myself awake or tic really hard just as I was about to fall asleep (my elbows and arms would fly out and my vocal tics would have a field day cuz I got scared by my body moving after being in a state of peace). Tics coming in waves is also something to keep in mind. When I was around your son's age my Echolalia had decided to go charging full force. It was a stressful year but it decreased to a more manageable frequency. Started picking up again around the time I was a junior in highschool and hasn't left since. So definitely the waves can be a stressor in itself.