Tics

[AshleyWal]

9 year old with motor tics for almost a year. Lots of them. Simple tics. Please tell me what the professionals have and she will grow out of it!!

@AshleyWal - my DD was 13 when she started feeling "shivers" which then became a neck tic, and then and arm tic and verbal too. She'd tic with her arm and leg while sleeping, which I only realised when I shared a room with her on holiday. She also needed 12 hours solid sleep when she was ticcing a lot, possible because it was making her tired, possibly because of puberty, possibly because her brain was generally in overload. None believed me about this, and as she had to get up for school at 6am it was really hard for her to do anything after school, or even homework. She also had coprolalia for a while (which was, ahem, interesting in the classroom!) She's a little bonkerz anyway, so I sometimes ask her if a random word she's blurted out is a tic, but she claims it isn't.

She's planning on going into a career where should would have to suppress her tics, and she's confident she can do that. Her old friends know she has Tourette's, but she doesn't tell new friends and it's been 18 months since anyone asked her "Are you a sp*z?" (my DD was able to wipe the floor with the pond life who asked her this) Which is one reason I'm happy to talk about my DDs experience, and let people know many more people than you think will tic at some point in their lives, and it's just life.

I think it's quite common for children to stop ticcing altogether, which is why it can take a long time to get a diagnosis. I personally know a child who had a vocal tic (a grunt) for a year but it stopped completely.

Thanks for taking the time to reply. I also know of a few kids who have had an odd tic here or there for a while. But hers is constant. No known triggers (excitement may make it worse) she literally has them from the minute she wakes until she’s asleep again. You never know what tic she is going to wake with. I had a mini stroke just prior to this but she never seemed anxious over it. She’s seeing a psychiatrist in January this year. Her paedi says it’s common (I showed him videos) and that it could be related to the stroke but maybe not. Everything I’m reading says tics can only enhance tics, not create them.

I think it may often be children who don't seem anxious who tic - they do feel the anxiety and the tic is their means of processing/managing it. The external manifestation. My son never seems anxious: he's confident, easy with himself and others etc. The tic was the only visible sign that something wasn't right.
It wasn't just moments of heightened stress or anxiety that really increased them, but also excitement and anticipation.

I hope your recovery from your stroke has gone well - what a lot of stress for you.

I never thought of it like that. It actually makes a lot of sense

That does make a lot of sense @Lotsofpots. My DD was displaying OCD before she started ticcing. The GP had told her just stop, which she did, but then she started ticcing, which coincided with the first day of lockdown, so I think it was a combination that stress which accelerated the tics. Meanwhile she presented as happy to lucky, not a care in the world.

Maybe if you address your DDs concerns about your stroke, other family members becoming suddenly unwell, or other concerns such as her becoming unwell her tics might eventually calm down. (I know that's not rocket science and you've probably already thought of that).

It must be very tough for all of you.

Hi OP, just wondering if your child out grew these, have an 8 year old daughter going through the same thing.

Hey, no she has not. She doesn’t do many though and no one else notices but me. Much better than they were. She has better control over them now which helps her in social situations xx

My son had them - mixture of motor ones and verbal/noise ones - they seemed to come and go both in nature and intensity- we ended up getting a referral to a child psycholgist but this was after they started getting more OCD like (only doing even numbers of things) and more intrusive (he had them for a number of years i think but a lot less intense early on)
My view was that they were a way he reacted to anxiety and stress - certain things seemed to trigger them as well. Not sure if psychologist helped- seemed to give him a safe place to talk but may also have been the passage of time/maturity. now he doesn't have any (noticeable?)ones
we were told not to talk about them (it was hard as some of them used to be really irritating- he would also use them as an excuse) - he was good at hiding them as well- he used to pretend to dance or sneeze to cover a movement

My son has had tics on and off from the age of 4. He’s now 10. He can go months without one then his tic will change and be back again. So he used to hit himself in the head, then that stopped and a few months later he obsessively touches his nose etc. The doctors aren’t concerned and say he will grow out of it.

Glad to hear it's better now OP, and interesting other comments. My daughter throws her head backwards literally every few minutes and is in constant pain as a result. I am worried about the frequency and any resulting damage to her neck. I am awaiting a pediatric appointment. So worried:(

Oh Jen my girl had that one for a while. I have to say it was the worst one for us.! She was in so much pain 😭
I hope it passes for her soon x

Hi, just curious how your daughter is now? Have a 4 year old that has tic now for nearly a year and I am completely devastated.

My 8 year old I posted previously about (now 10!) stopped ticcing after about 8 months.
Interesting this thread popped into my emails today because the last couple of weeks it has returned, not as obvious but I think my ramp up as it started like this previously.
Again, it is in relation to something traumatising for her. She is trying to hide it and definitely has more control (though in a few weeks this may not be the case). She is aware of it and has stated the source herself.
I think this is part of her now and will come now and again if something happens to produce a high level of stress or anxiety. She was diagnosed with tic transient disorder.
@Ennyta I know how hard this is. Devastating is the word. I hope you and your child are ok x

Thanks @JenRL . Oh it’s so hard to watch it, and not being able to do anything 😕

from what I read around, if the break is more than 3 months, than the clock resets, so then it’s again transient if it resolves within a year. Hopefully that’s the case for you! Everyone says they can keep on coming back like that during childhood and stay transient until they are fully gone.

However, in our case, we didn’t have a long break like that, our breaks were about a month and two months later on, then coming back fully. It’s now nearing a year, which will put it into chronic bucket. I am just eaten alive with uncertainty of if this will ever resolve, lessen or anything, so I am curious what others in similar situation have experienced. Mine was so small when tic came, only just over 3 years 😭

just an update. My daughter is turning 12 in two weeks and I can say now, I have not seen any tics for about six months. Very very rarely, I’ll see her scrunch up her nose or something and start freaking but it quickly passes and think it could be normal movements. I remember thinking it was going to last forever and she had them for well over two years. But her paediatrician was right, they did go away.

Thanks for replying @AshleyWal. I guess your daughter tics went into chronic tic disorder? If you don’t mind me asking, did they ever wax and wane or just continued for that long without stopping? And did psychologist help at all? Everything I read is that over a year makes them less likely to fully go away.

Our paediatric neurologist was more vague and didn’t give me much reassurance, said 1/3 of kids will resolve (no guidance on how long that could take), 1/3 will continue with mild tics into adulthood and 1/3 will turn into Tourette.

They did wax and wane, but she never went a day without them for a good two years or so. Maybe more. They just kept changing. She did see a tic psychologist who did some therapy with her but in all honestly, she was too young to do the exercises properly. Eventually they slowed down. Came back, went away, came back, now I’m fairly certain they have completely resolved. If they haven’t, I do not notice them and neither does she. X

I think it’s important to add, our paediatrician told us the year thing you read about isn’t accurate. Loads of kids have tics, even as bad as hers. He said it’s still transient. He also said look around at other kids, they’ll have them too. I remember not believing him. Then I went to a school assembly and seen it for myself. And I also remember not believing they’ll ever leave. And being beside myself for years. But they did :)

Thanks so much for responses @AshleyWal. We had neurologist follow up today and were told 10 months now puts us more towards chronic group and to be aware that the longer the tic last, more likely it is to persist for life. I wish our doctor sounded at least a bit more optimistic. So I try reading your messages to feel at least a bit better.

When your daughter’s tics were coming back after being gone, were the episodes any shorter, milder, context specific, or equally strong? After how long did they start to go away first and how long were the breaks between the episodes? Did your doctor mention it could be for life and stay pronounced even if it’s simple motor tic?

Sorry for all the questions, I am just finding it hard to find real life examples online of kid whose ticks persisted for over a year, but still went away in the end.

The first doctor actually told me she had tourettes, I’ll never ever forget it. It’s probably why I never believed anyone else who told me they are common. Hers were truly horrendous. I remember her trying to sleep while snapping her neck. It was so hard. She usually had three at a time and they could literally change over night. Our peadi was extremely optimistic. And he was the right one. I never in a million years ever think hers would go away given how long they had lasted and how bad they were. After around the two year mark I believe they drizzled down. Then occasionally I’d see her neck snapping and think great, here we go. But it would last a day and pass. Then squinting, then nose wriggling. All passing quickly. Now, nothing. Our peadi also said, the majority of kids have them chronically. The transient ones are usually a child with maybe one tic during nervous times. I now see kids with tics every single day. I cannot believe how much it consumed my life for so long xx