So worried, daughter has tics

[mert]

Thanks Mlee, this situation is pretty new to us so I know we will have ups and downs. 

I am aware that people are very focused on diet and other stuff, we also do, but #1 trigger of tics in our issue is anxiety and how the kid handles positive/negative stress. 

I am now training my self on the black art of carefully selecting words, attitude and behaviour to make sure that anxiety is minimised. It's really not easy as some times a surfaced crying jag is a lot better then hidden worry at the back of her head. 

 

[mert]

Just back from vacation and wanted to share the status. I think we did a nice job of controlling the stress of travelling back to home country (and travelling inside the country) and coming back to Dubai. We did not experience elevation of tics at any point during the last month. Tics are mostly very mild and was not easy to detect for others while I was still able to notice them. 

Most of the body tics seems to be gone and replaced by mild tics around face. (I am suspicious of a new hand tic but don't have enough evidence) 

Vocal tics seems to also have gone but still she makes noises with her tongue inside her mount (like 'chack chack') but I know I used to make it too and have seen other kids doing the same a lot. Not %100 sure if tic or not. 

Since the very first day, her tics had been morphing in to newer once pretty quickly and I think we've gone through most of the possible tics. 

I think spending time with her and helping her build her confidence helped the situation. 

Now, school will be starting and I know it will stress her. Her resistance to stress got a lot better but I know some of her tics can come back. Worse of all I may need to travel more this year... 

I wish the very best for all the worried parents in the forum. 

[mert]

Back with more update.

Even on a declining thread, my ds tics kept on morphing , however they got increasingly harder to notice. I think that I still see some tics on her face, I am no longer certain. If I were not well informed on the topic, I'd not notice anything. 

However I got a feeling that school may increase her stress little bit and may trigger old tics. Not sure though. 

This is how it's going on at the moment. 

[mert]

It's been a while. But just in case there might be someone interested in the progress, here is an update after more then a year. 

Number of active tics, frequency, intensity everything followed a down trend until previous week to a point where tics were not easy to notice externally. Only visible one was nose twitching (or what ever it's called) , and I've seen exact same mimic on some other kids and it might have been more related to her allergic rhinitis rather then tics. 

However a month ago I started to sense a bit shaking on her arms , tiny, hard to sense unless you are holding her hand. Their frequency and intensity kept rising , interestingly nose twitching also lost it's frequency and intensity in parallel (but her allergy got under control too ) . 2-3 days ago shaking on arms and legs became externally visible to trained eye. 

Quite naturally this started worrying me and wife. We are taking our usual precautions that seems to usually work (or maybe just coincidence) 

1- Decrease negative stress to a minimum. We are already quite careful but not focus a bit more and micromanage... She does not have any anxiety disorder. 

2- Increase positive stress, like competitions , family puzzle solving sessions etc... 

3- Increase family and friend time , increase play time (shift balance from other places like homework unfortunately ... ) 

4- Less TV , less diphone (we are already in great shape so not much of a problem) 

Maybe we restart magnesium tablets , hard to know if they work or not... 

And finally a research paper answered some of my questions. If you've not seen it , please read. 

https://www.nature.com/articles/s41598-019-40133-4/email/correspondent/c1

Don't feel unlucky that tics did not getaway. Looks like they don't getaway very quickly, it always takes sometime. 

 

 

 

 

[ahmoy44]

Thanks for the update mert. It is good to be able to follow someone’s Tic journey after some time has passed.

I hope the measures you’ve put in place help with her tics. I can see with my own daughter that her emotions play a role in her tics so I’m trying my best to remain calm when I see a new one surface.

 

[mert]

Here comes an other update. 

I started following tics on an excellent sheet that helps me figure out progress of tics and when they emerge and when they get out of the picture. 

At the very first 2 months after 'new' noticeable tics kicked in we had some ups and downs however they never got very bad or to a point that would effect her social life. At the 8th week a steady decline started and leg/arm jerking slowly decreased in intensity and frequency and now gone. However during the course a few more tics came and go. We had some head nodding that was very infrequent for 5 weeks , we had a jaw opening tics that was also very infrequent for 8 weeks , a hip related tic that was frequent when walking but went away in a few weeks. 

Interestingly some long standing tics are gone now too , like broadening nostrils and nose twitching (not sure this was tics or related to allergic rhinitis) are either gone or very very infrequent that I do not notice. 

On the other hand an abdomen tic (that is pretty easy to mistaken for a breathing tic ) is back. It's not frequent and very hard to recognize externally so that does not worry me as much. 

EMTICS have published several papers , so if you've not read them those can be good resources. 

We are not using any supplements other then the very usual stuff. We are still focused on 'positive stress' , less TV/Phone'Tablet time , more physical activity. I think that being confident really helps her a lot and at her age part of the confidence comes from her physical capabilities, so I feel like gymnastics really help her a lot. 

 

[Mommymom]

@mert my happy 8 year old girl recently started tics and I feel lost and exhausted. We saw first vocal tic 3 weeks ago which progressed into few other vocal and motor tics. She had a really rough time with online schooling and a strict teacher. 
Reading through your daughter’s journey and your updates helped a lot. It gave hope. Can you please let me know how your daughter is doing now? 

[mert]

Hi,

I feel you.
 

First of all every one has a different progress. It’s more probable that situation will improve in 12 months and will continue to improve.

There is too much emphasis on ‘vocal’ tics. My view is some vocal tics are not actually vocal tics (any tic that involves muscles to make noises are not ) and Even if your kid has ‘real’ (whatever that means) vocal tics , this should not create extra worry at the moment. The diagnostics criteria for TS is quite out dates and pretty much meaningless and most doctors agreed

I concentrate in a few things 

1) Remove negative anxiety from her (positive stress is good , should he regulated though) as much as possible. 
 

2) Improve self esteem , make sure she gains skills / strengths that makes her comfortable  

These seem to help a lot. 
 

And with time our situation improved, although it’s not fully linear. We had several periods where it went tue other way, for a few weeks/months. 

I keep an excel sheet to quantify the status and trends. It also relaxes me. 

let me know how it goes for you

PS: There are a few quite interesting studies going on about the subject. 

best regards 

[Mommymom]

Thank you so much for your response @mert. I really appreciate it.
 

I understand it’s hard and that I need to have lots of patience and need to give time. As parents, we feel so anxious and feel the need to intervene and help kids get better as quickly as possible. 

I really like the idea of positive stress, keeping  up self-esteem and finding activities that define their strengths. 

The sudden onset of tics definitely created stress for my daughter. I am waiting for appt with child psychologist to help with her anxiety and stress. I am hopeful that if I take care of that issue, it will lower the tics. 

Can you please share different ways you create positive stress for your daughter? I will start maintaining a journal as you suggested. Did you get any luck with allergies tests and by avoiding certain foods like gluten, dairy etc? 

Thanks in advance. 

[mert]

Allergy tests came back negative and I could not corralate tics flare ups with allergy in the long run, although I am still having an eye on it. 
 

since your doughter is older and if she is aware if the tics, unless tics decrease (which is likely to happen) quickly you can start BCIT (or bict , cant remember ) 

For positive stress , I try to create competitive games and spare time for them. For example we play hours of woleyball with a balloon where a coach devides the fileds or play miniature football competitively. It’s basically involving just a bit if competitiveness (making sure she has more then a fair chance of winning) to some tasks (not everything) 

i.e. When making dresses to her ponies , I challange as can we make the best ever dress etc... 
 

best regards

mertol

[mert]

If she is aware of the tics, relieve the stress by explaining this is ok and sometimes normal and it’s likely to go away. Don’t try to make her stop, this creates anxiety and makes things 3x worse.
 

First month was by far the worst one. 

PS : it’s important to asses if there are comorbid behavioral disorders like adhd , ocd etc. as they should be treated. If they are not present I would not worry much. 

[Mommymom]

Thank you @mert

Yes, I explained my daughter about tics and that they will go away eventually. I also told her that she doesn’t need to suppress them. I see her being self aware in social situations. 
 

Balloon volleyball sounds so much fun. I will give it a try. Love the pony dressing competition:) I play lot of board games with my daughter. Her tics are worse towards the end of the day. 

she have a really strict teacher and the online schooling was not working for her. She was under a lot of stress due to this. I spoke to the teacher and requested her to create a more friendly environment. I will check with the psychologist regarding adhd and ocd, it’s worth checking. 

Thank you. Please keep us posted with your updates. Best wishes to your family. 

Edited November 29, 2020 by Mommymom

[mert]

It’s quite common that tics will rise when she is tired. It used to be 10x common for my daughter at the beginning.Also we realized that she would have a lot less tics if she slept more the usual. That’s what we did, 

1) Limited the TV and ipad time to almost 0... Basically we played games instead. Bonus is she now prefers playing with vs any screen time. (We are not that strict on screen time as we did those days) 

2) We did not push her out of the bed for school, asked school to tolerate this which they did (but it was fs1/2 anyway) 

I personally do not think anythink we did changed the course of tics much in the long run. But removing anxiety, spending more family time helped with ironing out the peaks.

Statistically it’s very likely that she will get better. However recent studies show that it’s likely to be with you for a few more years. 
 

 

[Mommymom]

Thank you @mert. 
 

I am also observing that my daughter who used to be the most calm and composed is now hyper active, unable to focus and is very shaky. It breaks my heart to see her this way.

she is unable to sit still to attend online classes. I made appt with pediatric psychologist regarding her change in behavior. 
 

I am thinking of signing up her for gymnastics as you suggested. I need to enquire if they do in person classes in pandemic or not. It hurts me to see her struggle for an hour in bed with tics while trying to sleep. 

[mert]

I personally think that hyper activity is an other form of a ‘tic’ , an urge to do something, so might be considered part of the spectrum. That’s my personal opinion yet prof I chatted on the topic agreed the view. 
 

We had the same issue of tics before sleeping for a long while, almost a year. 
 

Make sure you got all the help you can to cope with the situation. 
 

i am positive that you will be in a lot better situation in short time.