So worried, daughter has tics

[Mommymom]

Agree with your tic/hyper activity analysis. Thank you for giving optimism, I really hope things will get better.  

[Mommymom]

Hi @mert

Hope you are doing well. How is your daughter doing? Here comes an update and few follow-up questions. 

I see that my daughter's throat clearing and breath out from mouth tics are mostly gone. She still does heavy breathout from nose followed by 'hhmmm' and hands pulling towards her. Frequency remained the same, its just that the tics are different. 

I am still waiting for Dr to order food allergies, PANS/PANDAS and vitamin deficiency tests. Socially my daughter is doing ok but I can sense that she is under tremendous stress knowing people are observing her. Few things I did from last time:

• Started Gymnastics class for her, I am afraid I will need to take her off soon due to COVID lockdown in California.   
• Less gluten, less sugar, less diary and eggs.
• Less screen time, this is hard due to online schooling and online homework.
• At least 9 hours of sleep.
• Started following tics on an excel sheet as you suggested.
• Pediatric psychologist did one session so far her anxiety and taught deep breathing and progressive muscle relaxation exercises. 

These questions remain: 

• Read somewhere that high mercury levels may be the cause, we eat fish and eggs often. Do you think I should get my daughter tested for Mercury levels? 
• Does diet really play a role? I know its not easy to answer, I am asking since restricting her favorite foods are causing more stress and anxiety. 
• Read about mold and its relation to onset of tics, I did a mold test in my daughter's room and found small traces. Could that be the culprit? 
• Found a naturopathic Dr who is going to charge a lot of money and run some tests while Neurologist is asking us to wait and watch. I am afraid of drawing too much attention to tics in the process of these tests. Should I wait and see if tics get resolved (its been almost 2 months since tics started) or do you think going to Naturopathy is a good idea?
• Can hand jerking/pulling towards chest be not tics but a different movement disorder? 

I have been re-reading your comments on this thread again and again looking for clues, mapping the timelines, what to expect etc. Thank you for the knowledge you are sharing in this process. 

[mert]

Hi, 

We are doing ok, we still have 3-4 tics with wax and wane. In the long run we think we are in a descending trend. 

Please do not consider me an authority. I am just an other worried parent. 

Unfortunately there are way too many unknowns about tic (and related) disorders. There are very few researches that focus on underlaying reason for tics and why some get better and others don't. Luckily there are now, some researches on the topic like EMTICS and some other I pointed out in other posts.  

I try to stick with evidence based treatment strategies but this does not mean that others methods can not work. Tics wax and wayne and expected trend from onset is downwards. This makes 'isolating' the effects of supplemental vitamins/diatery changes and other things very hard. 

We try to follow a healthy diet with no MC Donals or smilar stuff. We tried 'gluten free' diet for a while and also a 'milk' free one. It was quite hard for us. At the end we gave up but still limit 'milk' as our doctor told us that he does not think these have any relations with tics but reducing milk is considered healthy anyway and won't make harm. 

I am not knowledgable on mercury poisoning enough to comment on it. Mold is unhealthy and so there is no harm getting rid of it. I use dehumidifiers time to time to prevent mold as I am practically living on an island. 

For the naturopathic DR, I only believe in evidence based medicine/treatment , if the DR can point to some research results about why he is making the tests etc, I'd check , otherwise skip. But that's me. 

I know how 2 months feels like multiple years under stress, been there. I remember that I lost 20 lbs in the first 3 months very rapidly. However when it comes to tics, it's a very short period. 

Can some movements be other things then tics? Yes, they can be. Some hyperkinetic movements can easily be misdiagnosed as tics. (or there is a type of seizure which often looks like a tic.) Here is a paper on the topic you may find interesting. 

https://pubmed.ncbi.nlm.nih.gov/9613740/

Also compulsions, impulse behaviors etc can be misdiagnosed as tics too (does not like your case though) , you can read an old paper on the topic here, a google search may find newer ones. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2656307/

I believe in the thesis that Tics, OCD, Hyperactivity etc.. are different manifestations of the same underlaying condition. 

I also read that tics being elastic is considered a good thing, on the other hand I think it's actually the norm. Tics keep changing, usually in 6-12 week periods. But some stick longer, some stick shorter some come and go changing a bit every time. 

While not useful much, I also observed that sensory physical stimulation does trigger tics. As an example, using googles at the pool, after some period of time would start triggering 'eye' related tics. Teeth development (new teeth coming etc..) can trigger tics around jaw. 

I believe relieving anxiety and supporting self esteem should be the focus. I support her to gain new skills as much as possible to up her self esteem. We had the same issue with gymnastics and continued online. Not 100% effective but 80% was ok. She got quite strong so she does not feel under stress when physically challenged. 

Btw you are as important as your kid and you also need to find ways to keep your anxiety levels low and manageable. It will build up and it can result in behavior that will result in increased anxiety in the child. (been there , done that) 

Keep on updating us 

PS: Intensity of the movement (speed, extension, strength behind) etc is also a good measure like frequency and can give you insight on the trend. I think we've seen noticeable decline after 4-5 months or a bit more. 

best regards

Mertol 

 

[Mommymom]

Thank you for the detailed response @mert. It is so good to have someone who is going thru similar issue weigh in on various topics. I appreciate your insights and your opinion on prognosis being mostly on descending trend in the long run. I really hope that's the case for my daughter. I understand you are no Dr but sometimes parents are much more knowledgeable than Doctors. 

It is indeed very frustrating to see how little research is being done in this area. The nature of the issue, frequency and the age group demands more and more research, intervention and prevention from medical community. I also believe in science and evidence based treatment. I will continue to work with the pediatric neurologist to seek answers for my questions. 

Thank you for your caring advise to take care of myself to be able to support my daughter. I did broke down many times in the last few weeks. It was not helping the situation and was I was making an adverse impact. I immediately reached out for help, I am awaiting stress/anxiety management session to be scheduled for myself. I think parents going thru this shouldn't hesitate to seek help for themselves, then only we can better support the kids.     
 

I want to share that I started using homemade coconut milk as an alternative to milk in smoothies. You may want to try since coconut is supposed to be really good for memory and brain functioning.

As you suggested, I will continue to do what I can to support my daughter keep building her self-esteem, create less stressful env and help her develop new skills. I hope parents reading this comment will do so as well. 

Thank you again. 

Edited December 20, 2020 by Mommymom

[silver77]

@merti would love to hear an update on how your daughter is doing.  I’m going through this now with my 7 year old daughter.  

[mert]

We still have some tics here and there, but they are getting increasingly difficult to detect even by me. There still moments where tics do increase , but it's relatively a lot easier peak and relative to the first two years peaks duration is significantly shorter. 

[Astley]

Dear Mert,

I have read thru your post from starts. Recently my daughter started the abdominal tics with the abdominal sucking in and out. Last 2 days, she started the head turning tics. She is 4 years old

We are so worried. Doc said now cannot determine it is transient or chronic and have to monitor. 

May i know how is your doing, how long did she last the intense tics and has she fully recover?

 

[mert]

Hi,

I am no doctor and make sure you that you verify everything you read/hear , including what’s written here. 
 

Recently there had been some new studies (EMTICS) and some others like https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7316401/#!po=43.5780

My understanding is ‘transient tic disorder’ does not exist or very rare. That is also inline with all of the cases I’ve seen around us. (Tic’s are not rare) 

I had the chance to exchange some emails with the author of the paper on the link above, and he was kind of to respond to me. He told me that he did not see tics resolve (though severity/freq decrease year over year) in 2 year follow up , but had witnessed some of the children were free of tics at year 3. (These results were not published) 

My experience was smilar. We see the greatest decline after the end of 3rd year. Right now it’s pretty hard to detect any tics, but I won’t say we are tic free. 
 

I know I can not stop you worrying, been there, done that. But don’t worry excessively, you may (will) see some ups and downs , but it’s highly likely that tics will resolve in a few years. On the positive side, this issue allowed me to focus more on building her self esteem which now also helps here a lot even when there are no tics around. 

Keep reading scientific evidence and clinical trial results. 
 

We did kept a diary and an excell sheet to quantify the status and link events/circumstances etc that trigger or that help with tics.

 

Best regards 

Mertol

 

[Astley]

On 8/10/2021 at 9:03 PM, mert said:

Hi,

I am no doctor and make sure you that you verify everything you read/hear , including what’s written here. 
 

Recently there had been some new studies (EMTICS) and some others like https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7316401/#!po=43.5780

My understanding is ‘transient tic disorder’ does not exist or very rare. That is also inline with all of the cases I’ve seen around us. (Tic’s are not rare) 

I had the chance to exchange some emails with the author of the paper on the link above, and he was kind of to respond to me. He told me that he did not see tics resolve (though severity/freq decrease year over year) in 2 year follow up , but had witnessed some of the children were free of tics at year 3. (These results were not published) 

My experience was smilar. We see the greatest decline after the end of 3rd year. Right now it’s pretty hard to detect any tics, but I won’t say we are tic free. 
 

I know I can not stop you worrying, been there, done that. But don’t worry excessively, you may (will) see some ups and downs , but it’s highly likely that tics will resolve in a few years. On the positive side, this issue allowed me to focus more on building her self esteem which now also helps here a lot even when there are no tics around. 

Keep reading scientific evidence and clinical trial results. 
 

We did kept a diary and an excell sheet to quantify the status and link events/circumstances etc that trigger or that help with tics.

 

Best regards 

Mertol

 

Dear Mertol,

 

Thank you so much for your reply and sharing the information.

Yes, we are worried as now the head turning with the mouth open is very freq. 

I have been keeping a diary since the day she started the tics. Actually, the tics started in Apr 2021, after 2 weeks it was getting lesser and nil. 19 July 2021, it came back fiercely with the abdominal. 5 Aug 2021, the head turning tics started and the abdominal tic was decreasing. 9 Aug 2021, the head turning tick was very freq and intense. It was like every min will do many times. 

Able to share your dd experience on the peak and how long will it takes to subside?

Really appreciate your reply as search and google the whole internet, this is the place where you had share your experience.

 

Thank you

Astley 

[mert]

At the beginning most tics stayed around 4-8 weeks , usually each tic peaks within 1-10 days of surfacing but I’ve seen lot’s of exception, i’e. I’ve seen infrequent tics which stays thatway for weeks before gets frequent too. 
 

Also pattern have changed dramatically year after year. Right now it’s far different then it was the first year. First year (and probably the second one) we usually had 4-8 different tics at the same time, some being more dominant. Head turning was the first tic we had and it was by far the most frequent, disturbing and longest tic. It took months for it to go away. Went away several time but came back again , each time less frequent though. Can not remember how much it took but I am certain that it took more then 8 months and even when it was completely gone, it came back in different forms 2 year after.  (Different head movement) 

[Astley]

On 8/12/2021 at 3:20 PM, mert said:

At the beginning most tics stayed around 4-8 weeks , usually each tic peaks within 1-10 days of surfacing but I’ve seen lot’s of exception, i’e. I’ve seen infrequent tics which stays thatway for weeks before gets frequent too. 
 

Also pattern have changed dramatically year after year. Right now it’s far different then it was the first year. First year (and probably the second one) we usually had 4-8 different tics at the same time, some being more dominant. Head turning was the first tic we had and it was by far the most frequent, disturbing and longest tic. It took months for it to go away. Went away several time but came back again , each time less frequent though. Can not remember how much it took but I am certain that it took more then 8 months and even when it was completely gone, it came back in different forms 2 year after.  (Different head movement) 

Thank you for your valuable sharing and input. Appreciate it so much. 

Your sharing is so important to us. 

[madimi]

Just wanted to say how helpful your post were for me. Im also a very worried mother of a son with several tics(mostly motor) wich tend to peak and lay low again. Now after a slight cold he developped a cough tic wich i must admit is very hard for me to deal with since its so obvious for everyone especially now a day (corona) i worry cause ive read this are vocal tics and tends to go more to the side of Tourette disorder. anyway i hope your daughter is doing well!

 

Greetings from sunny Greece Lindsey

[mert]

Greeting from Dubai, I know how difficult it's, at least at the beginning. Tic disorders are a very wide spectrum and every child is wildly different though there are similar patterns shared among them. One thing that is very clear to me is, basic tic disorder is significantly common, I've seen it at several of my friends/relatives kids and if you think how uncommon it's among adults, you can understand that many of the kids will get to a point it's not easy to detect. 

There are several kinds of tics, but I think vocal/motor tics is a very bad way to categorize them, also meaningless. As many believe, I think Tourette Syndrome naming is not very meaningful. Coughing is an physical activity and unless your kids is doing it for the sound of it (very unlikely) it's more or less a motor tic. Our daughter also made some short noises like 'hih' when she had abdomen related tics. I did not consider them as vocal tics.

As I pointed out in earlier posts I found that my kid had less tics when she felt more confident and I focused adding her skills that would make here feel confident of herself when under pressure. It's impossible to know exactly if that helped or not, but I don't think it caused any harm. 

Don't worry tics will wax and wane, peak points will start getting lower and lower after one year usually and every following year it seems to get better in our case. Do we have tics, yes, but to a point that I usually not notice them. But we still have some peak periods after four years and I repeat my self to hold on 1-2 weeks... 

 

[madimi]

First of all happy to hear your dauhter is doing well.

My son has been having tics for 3 years now on and off and even last summer for almost 6 months i didnt notice them at all  exept at times he watched tv. but during the day being outside at activities they seemed gone.  So when this month 4 to 5 new tics submerged out of nowhwere i mus admit i panicked and i think at times he has noticed my frustration/sadness wich ofcourse doesn't help. so my question how do you deal with it as a parent? I feel like surfing the web for nights in a row i might be losing myself in worst case scenarios.  I read about tic therapy did you ever considered this? and wich approach seems best to you? 

 

greetings

[mert]

It's quite normal that tics came back, probably they were never fully gone. And after a long recession when they come back, which also happened to us multiple times, it does exactly the same to me, that it does to you. No difference. I keep repeating myself 'ignoring' and making sure she/he does not feel 'odd' is the right approach and will shorten (not 100% sure but that's how I feel) the 'peak'. And I agree it's very difficult for parents, I am no different, it's very difficult for me too. 

Almost all older resources on tics have misleading information (including clinical trails) and also if you search there is a nice research on why these studies conflict. However there are quite nice newer publications/clinical studies on tics, I should have put some links on my previous posts. So make sure you have a functioning filter before you try to digest the information. 

There are proven therapies for tics. however it's recommended to have the therapies if tics are interfering with the life and decreasing the quality of life for the child, also it's usually recommended to have these therapies when child develops the 'I' function (around 9-10 ? ). These are the reason we have not utilized these therapies at the moment.  

One quick note, simple motor tics are usually benign, but if you also have OCD/ADHD or similar comorbid disorders, you should immediately seek help as early as you can.