So worried, daughter has tics

[mert]

12 minutes ago, MLee said:

Mert,

What do you think helped them go away?

They didn’t go away. Since my last post, I saw some tics, probably a smaller ‘peak’ is coming as it was quite for some while. But it’s way better then it was a year ago , and a year ago was better then two years ago. Overall it’s in a declining trend. 

The only trigger I was able to outline is ‘anxiety’ . She is not overly anxious but when she is anxious about something I think thicks are triggered. So that’s what I am focused on. I try to built self confidence as much as possible so that she can deal with anxiety. Help her gain skills and keep her busy with supports and control the level off ‘healty stress’ to increase her tolerance to anxiety gradually. That is my strategy. But I don’t know if it’s helping or not. At least it’s not hurting. 

 

 

[madimi]

Hi Mert, Happy to know your daughter tics became milder.

We are still going in waves and seem to be be rotating through older tics so i take it as a good thing he hasnt developped new tics.At the moment we see shoulder shrugging (but only when walking outside ) and a cough/throat clear quite frequent.

Only thing seems to help my son are outside activities its where his tics seem to be at its lowest. And being on a ipad he has them the worst.

My sister has five kids and 2 of them are also experiencing mild tics and my sister has been blinking here whole life a lot so i do think there is a genetic link in my family.

Tourette diagnosis seems likely for my son.

[mert]

"Tourette" is quite a dated diagnosis, and almost means nothing. And I don't think that coughing or throat clear is actually a vocal tic. 

Most people share the same feedback, best @ activity , worst @ in front of screen. Screen time is almost impossible to avoid, I suggest converting screen time from passive watching to creative activities like video filming editing etc. I know can't be done at all circumstances... 

If the tics are not very frequent, it's a positive sign. don't worry if new tics come in, we have it all the time. I think frequency and strength of the movement is what counts most. 

I am sure your son will gradually recover. 

It also looks like we have multiple instances of tics in the family too, so I am positive that genes definitely play a role. 

 

 

[madimi]

Just wondering how everyone is doing

My son has turned 9 and still tics. The evolution of tics have changed over time, before he used to be stuck in 1 or 2 for a few months and as of right now every day its different he can do a eye roll 1 day and the  next day it can be entirely gone.

So every day its a surprise😀

He is still not bothered by his tics and at school his teacher keeps looking at me like im making it all up. so its possible he supresses them at school or are they just not that obvious in a class with 20 kids

At home i  always dee some kind of tic so im really not overeacting.

He is been doing 4 months of therapy and i noticed no difference.

By now i thought i would handle things better but every time after a good waning period when the tics suddenly make their comeback i still feel as defeated as i did in the beginning . 

 

Hope everyone is well

 

Greetings.

On 10/17/2022 at 1:25 PM, mert said:

"Tourette" is quite a dated diagnosis, and almost means nothing. And I don't think that coughing or throat clear is actually a vocal tic. 

Most people share the same feedback, best @ activity , worst @ in front of screen. Screen time is almost impossible to avoid, I suggest converting screen time from passive watching to creative activities like video filming editing etc. I know can't be done at all circumstances... 

If the tics are not very frequent, it's a positive sign. don't worry if new tics come in, we have it all the time. I think frequency and strength of the movement is what counts most. 

I am sure your son will gradually recover. 

It also looks like we have multiple instances of tics in the family too, so I am positive that genes definitely play a role. 

 

 

 

[mert]

I recommend keeping a daily log in Excel or similar format that quantify frequency, number of , intensity of tics. You can than create a chart and have better understanding of the trend. 
 

As tics wax and wane at a very low frequency and intensity/frequency of tics change very slowly over time it’s not really easy to understand the trend. 
 

My daughter turning 8 in 2 weeks and it’s been I think close to 5 years (as I think we had some tics way before, anyway) from the first peak. 
 

Right now, I can only see 1-2 tics every couple of days and if I hadn’t known, I’d just qualify them as some odd movement of an 8 year old. 
 

We did have a rotation of tics like you, where most will stay 1-2 months (multiple tics , same time) where some tics may rotate a bit quicker and some may stick bit longer. However last 1.5 years, this rotation become noticeably quicker (also intensity of tics got lower along with frequency, but we still had relative peaks now and than) and tics become less sticky. (We were never down to single day though. ) 

So I take this as a positive. I think in a year or so, you will see considerably decline. 

And, like you, I never got better handling this internally. Ask for help, when in need. People are happy to help. 
 

 

[Atex]

Madimi, my 9y old daughter sounds very similar to your son, and there is definitely a lot of daytime suppression going on.  I think the magnesium baths definitely help, but she has gradually progressed since about 5yr old.  What I find really telling is that she has become knowns as the barometer of any type of upcoming sickness in the house (whether she shows symptoms of being sick or not).  We have two other kids in the house and the flares almost always correlate just before anyone in the house start showing symptoms of being sick.

We tried CBIT for awhile but the psychologist was not helpful whatsoever.

On the positive side, finding out she was gluten, egg, and dairy sensitive has really improved the gut symptoms (was always on the toilet) but unfortunately it did not change the progression on the tics.

[madimi]

Hi Atex.

My son is 9 and his tics are also slowly progressing every year, but after obsessing for many years for finding triggers and going from one doctor to another, I recently decided to take a step back and just enjoy life. Every kid with tics is unique with his own triggers. Personally for me i don't believe change of diet, gut health etc.. made any difference for my son. 

Cbit didn't help my son either, he even told his therapist; why i have to change my tics they dont bother me i just want to be free. This changed my view a lot my son isn't suffering from his tics only i was sadly.

Do i see triggers yes, screentime is a big trigger for my son, but i still let him, why take away something he enjoys just because he tics more while doing so! I see in the mornings he almost doesn't tic and towards the evening they tend to get more.

Exitment is also a trigger for my son we went to a Water park and he ticced more.

But there are also many times he doesn't tic at all. Like on the beach i rarely see him tic, where we spend many days cause we are living on a island. Or while eating dinner my son doesn't tic or when playing with his pet hamsters.

So what im trying to say we can help a little, but cannot control the tics entirely.

And maybe in a few years they be gone or maybe not.

But me being more relaxed helped my son for the better for sure.

Greetings

[mert]

I have to agree with Madimi that tics, especially at early ages effect the parents far more than then the child. A long as it's not because of extra stress or anxiety, I don't very actively try to remove triggers anymore. ( I still sometime do selectively) i.e. My doughtier had a very certain tic when we were playing volleyball but I kept on practicing with her (she eventually got to a point she is better than me now) and that particular tic went away quickly. 

 

Btw, after a very steady decline we have seen an increase starting one week ago (we are at vacation , traveling new places ) not as bad as our 'worst' times, but still far worse than our average for the last two years. I hope that this temporary but I also know puberty may increase the symptoms. 

I really wish I could stop worrying. 

[madimi]

Hi Just wondering how everyone is doing?

We are still coping with tics, lately my son has many different tics at the same time but frequency of them happening is lower. If that  makes any sense? I still have not figured out what triggers them. Stress and exitement seems te make them worse. And when he is sick with a virus he tics much less wich is odd i think.

Hope everyone is well.

Lindsey

[mert]

We had a brief peak end of summer. I now say brief but need to admit it felt like a year to me. 
 

She still has some active tics at the moment but these are very hard to see for people other than me and wife. 
 

As you pointed out frequency went down significantly and also intensity of the movements are a lot lower, most of the time. This might be because she is better at controlling it. 

[Swetha]

Hi,

My 10 year old son tics a lot when he watches TV or reads a book. 

A month ago, he had whole body tics and now every week the tics keep changing. He is exhibiting these strange stomach tics, as if he is having troubles with breathing or something.

Has anyone experienced these strange stomach/breathing tics? Has anyone found a way to deal with it? 

 

Thanks in advance! 

[mert]

We had breathing tics, for a long while. I don’t know if it helped her , though I am certain that it helped me a lot, I gradually increased her physical activity so she would be busy and concentrated, focused, which generally decreased her tics. 
 

Today, I am not 100% sure if eliminating the circumstances that trigger the tics really helps or not.

[madimi]

My son also had breathing tics, unfortunatley i don't have any advise to help with this tic. 

In our case my son has a tic for couple a weeks and than stops and turns into another tic and often 3/4 tics at the same time.

Been looking for answers like any other parent over here, but had no luck so far.

Stay strong i know how difficult it can be.

 

[Swetha]

Thank you @mertand @madimifor your kind replies. I know its not going to be a simple and an easy route. 

But yes one day at a time and I am trying to be positive! 

Wishing only the best to you guys! 

[SoWorried_1]

Good evening everyone,

I’ve been reading and following all updates for a long time and finally got courage to write here. 
My son’s tics started 1,5 years ago right after strep infection/ sore throat. He was very young- 3,5 . He just turned 5. Same as other kids, we went through many types of tics, but it got really bad in the last month( sometimes in April ), It just hurts me so much that I can’t help him. I’m so worried kids will start making fun of him And I can’t help him.

Mert, madimi,

how are your children doing now ? Tics any better ? Worse ? From your experience over years, do you remember if year1, 2, 3, 4 ( or any other years) tics got worse ? 
For now it looks like year one was “ok” but it’s getting worse now  I’m loosing my mind here, can’t sleep, can’t eat. Wish I can do anything to help him  

Thank you for your time everyone