So worried, daughter has tics

[madimi]

Hi,

i've read your story and its quite overwhelming all the information on food and natural foods and treatments. My son is very difficult when it comes to food so that will be struggle for sure.

I understood your son is doing well now with minor tics, so when you said full blown tourette by 10 what can i inmagine? and so its possible that with age all tics (tourette) disorders can improve or are you sure the treatments made it better?

 

[mert]

Reading all the posts, I understand that most people are fearing the 'Tourette' diagnosis. 'Tourette' diagnosis is very outdated, defined at times where we had almost no understanding of the underlaying mechanisms of TIC's. (we still don't have much, but at least we know we don't have) 

Definition of what a vocal TIC is incorrect. 

TIC's are part of a urge control disorder. Like OCD and ADHD. If you are unable to control an urge to make some movements it's usually called motor TIC's. You can also unable to control urges for behavior or thoughts. (OCD/ADHD etc..) 

Coughing is usually not done for the sake of it's sound by the performer. Therefor it should not be categorized as a vocal tic, it's still a motor tic as coughing is still very physical. Repeating sentences or words (triggered or not triggered) is on different part of the spectrum, slightly closer to OCD dimension (perhaps) 

Also that 1 year 'mark' is imaginary. There never had been such a cut off. Recent studies has proven that once started these tics do stay for a longer time. 

Already pointed out bu several poster on the thread but 

1. Read the latest research papers. You may need to google every word to understand these documents, but do it. Don't take the easiest path and try to learn from other peoples Facebook posts. 

2. Seek help from professionals who have up to date information on the topic

3. CBIT has proven to be useful and can be delivered remotely. It's also proven that remote CEBIT is equally good. 

4. There is no harm on going for a healthy diet or using approved supplements, but don't expect too much. 

best regards

 

 

 

[madimi]

Mert as always i find your information very useful. Also means that a lot of information on the web is incorrect.

Reminds me of our Neurologist saying to see it as Chronic tic since tourette naming for her is not useful, unless if there were other co-existing disorders like OCD/ADHD. But after reading the web i took her in doubt.

My sons cough has morphed into a throat clearing with still very high frequency. Still doing everything i can to take his stress levels down. Its scary we never had such high frequency (5 sec)with a a tic, maybe his Covid infection had something to do with it or the anxiety that came with it. Only positive its the only tic at the moment as all the others have subsided.

How is your daughter doing? 

Greetings

[mert]

Your Neurologist is right, and even with OCD/ADHD , 'Tourette' does not mean anything. Diagnostic criteria for 'labelling' Tourette is not logical , TIC's, as you experience have several parameters (frequency, type, intensity, when they happen etc..) and just because someone has couple of motor and vocal TIC's for a period of time does not make them go into a subgroup called 'Tourette' , it's way way more complex then this. Also if you are diagnosed with Tourette , this does not provide you with different treatment options. If you completely wipe the 'Tourette' diagnosis out of medical history, nothing will change. It's diagnosis made based on very narrow set of criteria, that was established when no one had any idea of tics were. 

Having observed my daughters tics, at least for my daughter I am 100% sure that some tics are triggered by external triggers. Mask triggered jaw triggers, swimming goggles triggered eye blinking, playing volleyball triggers some specific tics. 

My early approach was to cut the activity short to stop the tics. But then I've seen that if we continue for a few days/weeks she gets used to and tics with triggers also go away. So I am no longer cutting the activity off unless there is a specific reason like, she notices and becomes uncomfortable. 

Right now we are doing very well but we had a relative flare up 2 weeks ago. It wasn't very bad, but we had more tics and more frequent also, but now we are back to 'minimal' state. Tic's are here, but hard to notice unless you know what to look for. 

PS: There is also an interesting retrospective study that tries to understand why several tic studies are inconsistent. 

 

 

 

 

 

 

 

 

[madimi]

interesting read;

Understanding how tics are suppressed may help some at risk for tic disorders: Identifying kids who control their tics may help others at risk for Tourette syndrome -- ScienceDaily

greetings

[mert]

I had read the article in detail when it was released, and some of my thoughts are also based on this article. TIC's usually don't go off, at least in short periods of time, which technically says 'transient tic disorder' does not exist at all. Also as anxiety and other factors such as where the kids is on the autism spectrum, gives a hint that tics is part of  larger multi dimensional spectrum. 

What I don't agree on the article is that, there is no evidence that 'tic suppression' is an ability that can be transferred. The reason behind some of children is able to suppress the tics more easily could also be 'their urge to perform tics' is lower and can more easily be delayed then the others, which I think is highly likely. 

 

[madimi]

Alright just feeling down and wanting to poor my heart out.

Last Februari (after a long period of time where tics were almost unoticable )my son started suddenly with a cough/throat clearing tic what lasted for a good 2 months with intense freqency. now the cough tic is low and a neck/shoulder tic emerged with very high freqency (every few sec)so for 3 months we are not seeing any decline in tics and i start to worry again very much. I mean for 4 years we seen on and of tics but never anything like this. I keep punishing my brain what happend? why got a sudden explosion of tics, what are we doing wrong? and what can we do? i called my neurologist again and she told me if i wanted to put him on medication! what seems very extreme to me, had anyone here ever considerd this?

 

[mert]

Hi Madimi, 

I feel you, and I am sure all others on this thread are the same. We also had similar situations, a sudden rise in tics after a long quite period, details might be a bit different but more or less the same. 

I'd first check if there are other accompanying issues like OCD/ADHD etc, if this is the case It might be good to start addressing them, if this is not the case I'd worry less. 

It may not be the case for you but I usually find out that trigger for some sudden peaks could be related to anxiety. Children are complex and sensitive ones can get anxious of things we never think of. (i.e. my daughter got anxious when we booked some vacation at an island, thinking there could be some sharks around) 

Also when tics peak, I think they are more worried that these will be noticed and as you'd be watching them more, they would catch you watching them, further elevating the issue, resulting in a longer peak. 

In my case, what I (try) to do is, eliminating the anxiety and making sure she feels confident of herself. There are a few things I (try) to do in parallel 

1. Ignore the tics as much as possible even if she tics right infront of my eyes. I don't turn my head, just pretend like I don't really care. If you feel he/she is too worried, tell it's ok and these will wane soon and close the topic. 

2. Try figuring out if there is any hidden anxiety. Some tricky questions, observation etc... If I find something, I try to fix it softly. 

3. Try building a new 'strength' or ability, to boost confidence. Like playing a sport extensively until she is far better than her peers. 

You don't have to follow my or somebody else's path. I am sure you will figure out a way. I don't know much about medications but I think each one comes with it's own side effects. I'd consider medication if BCT does not work and it's effecting life directly. The only exception is continuous tics like moving head rapidly from side to side etc.. may result in neural damage and should be intervened quickly.

PS: It's been sometime I searched and read latest papers, always take a look at recent clinical researches on the topic. 

Keep us updated. I wish the best for you and your child. 

[madimi]

No we dont have ADHD/OCD. I did ask Neurologist for testing ADHD (maybe i was missing signs) but she reasurred me if this was the case he would have clear symptons home and at school, wich is not the case at all.....!  

Thinking back i realise we did have some sensory tics (i like to call them) like he used to tell me if i could cut the label from his shirt because it was itching him, or would asked me couple times a day to rejust his socks, or didnt like to wear hoodies because it felt tight on his neck. But if i explained he had to wear it for example after a while he did, so i dont think it was that obbsesive like OCD meaning.

He plays football which he loves, i did notice when the coach puts him in the goal he tics a lot, when i asked him if he likes to be goal keeper he said yes but he is afraid to let a ball pass....! so i told him its okay when that happens and to just enjoy the game. But he loves it so we have to find a way to cope with the stress that comes with playing competitive games.

I hide my anxiety as much as i can but maybe time to time he senses it for sure....! 

Its just that that tics were here for a long time but always mild and he would go for hours without them on a daily basis and if i took him outside i never noticed them. So this is the big change for us now there here every second of the day with no pauses. 

 

[silver77]

Hi @madimi - there must be something in the air!  After a good chunk of time with mild tics, not gone, but really not noticeable, my daughter over the last 2 weeks has seen a big increase in tics and new ones.  She has been doing an eye wink/lip stretch for a while but would happen maybe 1-3 times an hour, now it's literally every 2-5 seconds.  She's also started to scrunch up her stomach/slight hunching over, incessant scratching all over her body, throat clear/grunt type sound every 5 seconds.  I've had two meltdowns privately over this.  Frankly every time I see her do this (which is often), it feels like a knife is stabbing my heart.  I do hide all my emotions from her, and it still continues not to bother her.  In fact, today she went to the park to play, ran into 5 other classmates and they all ended up in our backyard playing and it made me so happy to see.  I hold onto the good, and have started my own gratitude journal to write down 1-3 things I'm grateful for every day to get me through this.  I've actually started her doing it as well, every night before bed she writes down 1 thing she's grateful for. 

In addition to all of this, my older daughter (12) who has had vocal tics on and off for years (no motor), developed an eye roll in January.  It went away after 3 weeks and two days ago, started up again.  She told me today, friends are starting to ask at school what is wrong with her eyes.  We've had discussions about her vocal tics, as she also has a very frequent throat clearing tic, so she knows what tics are, but I'm certain she doesn't talk about it with her friends.  She has ADHD and I'm also starting to see OCD tendencies in her.  

Like I said, my heart hurts, I keep trying to see the good, remind myself this increase in activity will hopefully pass soon and continue to be present for my kids.  But it's so challenging.  I worry about their future and their happiness.  

You are not alone in this!

[madimi]

Hi everyone just wondering how you all doing?

I feel like we been in a rollercoaster of emotions (and tics) the last few months. The tics trend have changed a lot the tics morph from the one to another quite quick and each staying for a short period of time. wherelse in the past we used to be stuck with one or two for a few months. I am not sure what this sudden change means?

In the meantime he is not bothered by the tics and continues to be happy and its not getting in the way of his social life.

I must admit i dont think the tics wil go away anytime soon, and trying very hard to accept it as a part of our lives.

[mert]

So far I’ve not read a research that correlates the elasticity of tics to other parameters. Having said above, I’ve evaluated increase in elasticity   (Change of tics) positively. If the tics are not persistent and change usually the intensity is usually lower. 

Everybody experiences ups and downs in tic freq/intensity. it’s important to objectively document the severity in tics on a chart, so that you can take a look and see the long term trend, which is usually downwards. 

If there are comorbid issues, it’s quite important to address them. And finally CBIT seems to be quite effective for older children. 
 

Feeling exactly what you feeling deep in my heart, with all my heart I wish, hope that everything gets better for you. 
 

 

[madimi]

Thank you Mert.

Yes hopefully my son will start therapy this summer. We do realise he is under stress with school he follows private Greek speech lesson and he mentiod there he finds day school hard. He is very smart but i only speak Dutch to him at home so sometimes he struggles with the grammar at day Greek school. However his private teacher told me she never observed any tics so i think sometimes in social setting he can control himself. He also goes to Dutch school in the afternoons sometimes i worry if its all to much for him. But than again he is happy and the tics dont bother him.

Mert how is your daughter doing?

[mert]

I am also suspecting that tics were elevated (or surfaced) as like you, we moved to a different country and she had to start school with no English at all.
 

 Couple of months ago tics increased relatively, but couple of weeks later all back to minumum  levels, for now. I know she still has some tics, but pretty hard to detect for the untrained. 

[Chemar]

2 hours ago, mert said:

So far I’ve not read a research that correlates the elasticity of tics to other parameters.
 

 

Hello Mert,

I am not familiar with the term "elasticity" for tics - but am assuming you are referring to what is known as "waxing & waning"

If so, there are numerous parameters that can impact the increases and decreases in tics.

Have you read Sheila's book on tic triggers? Although not "scientific research" per se --the information comes from much anecdotal evidence, a lot of it over the years on this forum.

https://latitudes.org/store/tourette-syndrome-triggers-book/