So worried, daughter has tics

[mert]

Hi , 

I think we all can understand you as we all have been sailing through the same ‘storm’. 
 

Unless there are comorbid issues like OCD etc , it’s more likely to follow a downwards tren in the scale of years. ie you will still have months worse than previous months but year after year it should get better. 

if there are comorbid issues, focus on them first. 

It’s quite normal that it will start with an upwards trend. Initially I thought that we also had a very sudden very bad start but after sometime I started recalling that there were actually subtle tics dating to probably 2 years old. So when I look back, it went up 2-3 years without me noticing , and suddenly peaked and now going down gradually. 
 

Having said above, we still have tics, hard to recognise if you dont have trained eyes.

At 5 years old , kids don’t really care. Abd usually when they are playing together tics get lower in intensity. 
 

I recommend documenting the trend in an Excel file. Taking it one day at a time. 
 

He will get better. 

 

[SoWorried_1]

Good morning,

Thank you for your reply, yesterday was very hard “tics day”. I wrote this message after children went to sleep and I kept checking for responses here. 
I did analyze years of behavior and possible tics before it spiked at 3,5yesrs and I think you are right , he did have some Unnoticeable tics that we didn’t see. 
we went though all relatives that we can remember, nobody has in In the family and i believe most people with tics have it in the family. We have pretty stable family, always wonder why it started. If you can share your thought and findings or causes, I’d be very happy . 
Ive been documenting tics for a while and do think that it gets worse in the spring ( so far- 1,5 years in) and after “stress” . Pediatric neurologist wasn’t really helpful, he said just to monitor, but you know how we/ parents feel when we see it for weeks/ months every day. 
Since stress triggers it most of the time, I want to see if therapy with psychologist will help and he / I can learn how to manage “baby stress”. Has anyone tried it with psychologist?

iknow Mert tried to manage stress with  exercises and expose to it slowly.

how were your kids when they got older and kids at school started to recognize tics? How did you and your children handle it?

 

my other big worry is that tics will get so bad he will start banging his head throw out swear words, that would be a nightmare

thank you again for your time, it means a lot to put the heart here where you can relate and understand.

 

ps: Mert, I’ve been reading a lot of tics, and your findings/ comments are the best , after reading it I thought- he should write a book about it when he is ready, because so far it’s most down to Eearth and corrects findings and solutions.

 

thank you again  

[SoWorried_1]

I meant to add about ADD/OCD. I’ve been monitoring it too and I think most of the time I don’t see it. There were few evenings when he was unmanageable, behavior was terrible but I think it was because he was extremely tired ( maybe that’s what I want to think) but these spikes in bad behavior are at the same time tics spike. Maybe he is starting to “mask it” by running around and misbehaving? I don’t know. 98% of the time behavior is ok.

when he has tics spikes, I’m afraid to discipline him because I think I might cause more tics  don’t know what to do.

also meant to add- next year he will start school, and there will be a lot of new “stress”. I can’t even imagine what will happen with tics

[mert]

As long as there are no comorbid issues, chances of 'tics' getting worse are significantly less. 'verbal' tics are rare and 'swearing' is even rarer. 

At this moment therapy does not have much use and may impact negatively as it will create additional stress. He is too small and his life is not affected so no need to try any medicine with a lot of side effects. 

Try to learn to completely ignore tics. That is the hardest part. Your child will understand you are watching him, he will also understand because there is something unusual , he will be stressed and tics will increase and this will create cycle. We all have been in this situation. I still struggle trying to ignore tics after so many years, but that's what you need to do. And that's what you need to tell his teachers. Unless the behavior is harmful , ignore. 

I recommend focusing on gaining skills abilities, that will help with confidence, that will help him manage stress and that will prevent him getting under stress. i.e. Trying to learn is extremely stressful , start a bit earlier with baby steps so he won't be stressed when the whole class is racing to learn reading. i.e. Develop physical capabilities ( no one wants to arm wrestle my daughter after she beat the strongest boy in the class, according to rumors he is still upset) i.e. Teach football so he is the star at PE lessons. 

Our minds are designed to look for a solution, relate the problem with a condition, i.e. she drank too much milk, tics got worse.  Some can be correct, some will be imaginary. Being unbiased will be extremely difficult. 

Also I am still questioning which one is better, should we stop triggers or just ignore. I used to stop triggers, but I switched to ignoring them. Wearing googles during swimming used to trigger eye tics by a lot, now it doesn't and she swim like a fish now. Playing volleyball would trigger some certain tics, even when she was playing well beyond her peers, I kept on playing. I recognized that when I am negative about how she plays and demand more tics got worse, when I am positive and demand more performance encouraging here she gets so much better... 

Jumping from subject to subject, ADHD, OCD do not come and go, especially OCD is easy to notice, though some of his behaviors will look like OCD no matter... 

I had the same issue, when tics elevated , discipline becomes tricky. I still struggle and I am still trying to figure out best ways. However I never let her use this in her favor. What I 'try' to do is, convert all my 'negative' actions to positive ones as much as possible. i.e. Instead of giving a penalty, I ask her to explain me why she is wrong herself and pick a penalty of her choice. (I got pretty funny stories around this as sometimes she picks up to harsh penalties) . My rules is always trying to pause a bit and think how I can convert this into a positive and constructive experience. (not always possible) 

From the positive side, tics actually enabled me to be a far better father than I probably would be. It forced me spend far more time than I'd probably spend with her. End of the day, this created a nice bond with me and her. 

By the way, talking to my close friends, two of them just told me (and I've recognized after they told me) they still have some tics and they happen when they are anxious. 

Tic frequency within the child population is significantly higher than adult population. 

End of the day, whatever we write, whatever you read, you will be worried, you will be stressed. I lost 17kg's within a few months. (happily gained all of'em back)  

Please also note that my recommendations are based on my experience and everybody's case is different. 

[Chemar]

@mert your post today made me remember one from many years ago by my friend Lara. It helped me so much in those early days after my son's tics began, and we received the Tourette diagnosis- especially in realizing that there was that needed balance in helping him by improving what we could - but also not letting helping become a hindrance to him just being!

Here it is again:

Quote

It's OK to Tic by Lara

Just want to share something with you all, please.
Sometimes I find it hard to express myself on some of the threads. I hear you but I don't always know how to get across how I feel.

People with TS tic. It's OK!

Sometimes some tics can be self-injurious or problematic, that cannot be denied. Some tics interfere with all manner of things, like reading, writing, walking, breathing, talking etc. etc. etc., (yes, I know) but the majority of the time they are JUST tics.

I don't even notice people's tics much anymore. I know this might sound most peculiar to some people, but I also find tics of people I know very well, quite endearing.

People tic when they are relaxed. People tic when they are stressed. People tic when they're driving. People need to feel they can tic freely and not feel as if they're being watched, or being studied. It feels good to let it out. People tic 'cause they gotta tic!!!

My son sure has bothersome ones but they are only bothersome to ME when they are dangerous or are causing him grief for some reason or another. I think the most grief he faces is from people who don't seem to just see him as _him_ anymore. They see his constant ticcing and it's as if they negate the existence of his 'self'.

Every single day I am reminded how comfortable home is for my children. That's because school, for example, causes so much build up of unreleased energy. Kids and staff at school, despite education, still don't see past the tics. They don't see past how much my children have changed tic-wise since they were in Year 1. They don't look!!!

I'm not denying that tics can be of concern. I'm not denying that tics can be a right pain. I'm not denying that tics can really affect some people's quality of life. I'm not living in some unrealistic place where I deny the concerns and the pain these _can_ and do present. Believe me, please, I know. However, I think we need to understand in our own minds, that there are many more things that can cause more distress to a person than tics.

We need to start with ourselves. Start at the source. Change the way people view TS from here. I truly empathize with you all who are struggling with this in your young children. I have struggled, still do struggle, and will struggle in the future with some issues. I think the greatest thing we can all do though, is to look BEYOND the tics. Hey, maybe the rest of the world might get the same idea!

Your children's tics are just part of the tapestry of who they are and who they will become... just a tiny part.

 

[Atex]

Man, some of the posts here really bring back memories of sleepless nights.  What I have learned so far on this journey is that I think there's a heck of a lot more individuals with motor and vocal tics than the medical profession wants to believe.  There seems to be a vast number of cases out there that don't elevate to the level of Coprolalia; yet that is what's noticed and publicized.  

I also feel that the "moderate" cases are poorly understood (poorly funded research) and is probably why the medical profession seems completely blind to any other solutions than medication.  Moreover, i dont see a whole lot of doctors with enough depth of knowledge to wholistically put it all together.

All i know is that my daughter progressively got worse up until age 8; at which time we became aggressive in diet and environmental control, and now at age 10 she is completely tic free.  Like zilch since July 2023 except maybe once when she was sick.  Before we did anything she was ticcing upwards of 40 times per minute, had OCD tendencies, and had an aversion to loud noise.  I find it really interesting that she can tolerate loud noise now.

[SoWorried_1]

Good morning/evening everyone ,

oh how I wish i woke up and said the same - oh i remember this days :((( 

tha you for sharing your thoughts and ideas. When there is not much offered by doctors, advice from parents that deal with similar problems is invaluable.

another concern I have  is sleep/ tiredness.
When he is tired , tics get worse. We try to do all  “standard calming techniques”: no crazy activities before bed time, family story time, no tv before bed, good amount of outside time, etc but sometimes it doesn’t work.
He used to sleep in and now he is getting up at 5-6 am. By midday he is exhausted. At daycare they have “nap time” , I think it helps a bit after so many activities there but still not enough rest because they can’t really rest there with so many kids around. During weekend we have “rest time”, I think it helps. 

please share what evening “calming techniques”  worked for you guys or how did you make your children sleep more ?

thank you again everyone. 

[Chemar]

2 hours ago, SoWorried_1 said:

please share what evening “calming techniques”  worked for you guys or how did you make your children sleep more ?

 

Hi @SoWorried_1

I know all kids are different- but for my son the best calming at night came from a soak in a warm Epsom Salts (magnesium sulfate) bath with a few drops of lavender oil. He really looked forward to it, and would also enjoy a cup of chamomile tea that also has relaxing calming properties. Epsom Salts bath soaking also helps soothe those muscles and joints that tics can sometimes strain.

[madimi]

Hi,

I also understand how you feel, it can be such a lonely place seeing your child struggle with tics and desperately looking for answers. My son enters his fourth year with tics and the last 8 months his tics have been the lowest they ever been. Can i tell you why ? not really.....! I think every child is unique, for my son screen time has been his biggest trigger, there where days he wouldn't tic all day and as soon he sat down on his tablet they would come on. Times the tics where at their worst i also followed Mert advise and focused on more outside activities and family play. Next i realized tics are far from rare and many adults have mild tics much more than people with more complex Tourette, so that was my biggest hill to climb to stop convincing myself the worst would happen. My son tics have never been noticed at school, although i asked numerous times . which i still not understand cause at times he would tic every second of the day at home or even having more than 5 tics at the same time.  I might have been a stress factor for my son, taking him from one therapy to the other, only made his tics worse. Letting him get away with more then his brother because of fear triggering tics. I let all that go now and treat him like no other kid with all the stress and pressure that comes with it. Kids sense more than we know so be very careful.

Does your child also rotate through different tics?

Don't lose hope, i also had moments where it felt like his tics where only getting worse instead of better. But now he is 10 and they did get better. 

Greetings,

Lindsey

 

[Miruna]

Hi all! I finally mustered the courage to post here as well. I’ve read this topic since last year whenever I felt the need for some pozitive vibes. 
I feel I am living my worst nightmare at this point. My (now) 6 year old started around 4 with some throat clearing which went away in a couple of months. Thought is was medical, like many in the beginning. After turning 5 he started with a humming sound which was non stop. I barely ate for 2-3 months. Then many more came. Like @madimi describes, he rotates through a lot of tics, with 1 predominant and 2-5 “behind”. This pattern is become pretty obvious now. His tics are mostly vocal, motor ones are more subtle (finger fidgeting, lip scratching). Despite having so many, somehow people around him do not notice them that much - probably because he had no facial one so far.
Like @mert advises, I noted in a spreadsheet and saw that lately his peak periods are shorter now. So I sort of started to adjust and hope for the best. And adress other issues (behavioural issues, social anxiety, sensory issues) through family counselling. 

This until 3 days ago when my not even 3 year old started with a hard blink and a grimace. This time I took it really really really hard. He is my sunshine, my happy  kid, my hero who overcame a lot in his young life (prematurity, growth restriction, neuromuscular issues during the first year) and despite all of it, he is perfect in every way. Just learned to ride a bike with no training wheels last weekend. He was my refugee when my older sons’s tics are in a waxing phase. I don’t know how to cope with 2 out of 2. I feel this is so unfair. I don’t even dream to hope that they will pass quickly. I know that this is the case for most kids, but his young age and sibling pattern I highly doubt it. No tourette case in our family. My brother did had some mild tics growing up but not at the level of my older son. 
The fear is overwhelming, he is not even 3 yet and has dealt with so much in his short life, I just feel desolated and heartbroken. Nobody around me understands why I am taking it so hard. I can’t eat, sleep or do anything. When I see him tic I have to literally leave the room. I am in a very much denial phase. I don’t even know precisely why I am writing this message. I just need to let it out without someone telling me to get my act together. My love for my kids is imense and yet here I am hiding away and crying all day in a pillow. What do I do from here? 

[mert]

Hi Miruna, 

I think we all know how you feel and why you feel this way. 
 

Up on reading almost everything I can find and observing other people and families around me, I think there is certainly a genetic factor involved. The good thing is if your brother had it (may be you also had them but no one noticed) and recovered perfectly, it’s very very likely that your children will also do. 

I am no authority but I think that throat clearing or humming should not be classified as vocal tics. 
 

My nephew has the throat clearing and coughing tics time to time too.
 

One thing that’s important to remember is  kids do ‘feel’ , they’d understand you are watching, they’d understand if you are upset, they get really stressed.
 

 I know, we all know , that the hardest part of this game is ignoring, how ever that’s what works best, for all parties. I can only imagine how hard it’s with you with two children and I hope you can find the strength to ignore. 
 

Btw usually early on-set is associated with easier recovery. 
 

Ignore tics, focus else where, make sure you are good. They will get better faster if you get better. 
 

 There are so many of us. 

 

 

 

 

[Miruna]

Thank you for your answer @mert. You are right in everything you said. I just don’t think I can keep going like this, I need some help in moving forward. My mind is constantly in overdrive trying to solve something that cannot be solved. And I keep looking at my youngest to see if there are other things I missed. Over assess any movement he does to see if it is a tic or not, if there are new ones coming along. And he for sure feels the difference in me. 

Regarding vocal tics, I don’t know if is that relevant how they are qualified. I think I’ve seen all the common ones: coughing, throat clearing/grunting, tongue click, saliva sucking noise, sniffing, lip noise, air blowing on mouth and an exhaling noise, humming. Not all at once, and only a couple of them are still active and with the exception of the lip noise and coughing he currently does, the rest are pretty random/rare now. Curious thing is that he mentioned yesterday ( we had a discussion about tics because he kept asking his brother why he keeps blinking) is that his brain wants to hear the sound of the lip movement in a particular way - hence the non stop tic movement. And his constant finger fidgeting - he said it feels like he has bread crumbles on them, that is why he keeps moving them. This sounds like some OCD to me, which is similar to how my brother remembers the sensations he had as a child: the need to do the movement in a particular way, and the finger sensations my son described he remembers it identical. To a very small degree, he still cracks his finger joints/has some OCD thing with his fingers that nobody else notices it. But my son also has/had tics that he was not even aware he is doing them so who knows. 
I do agree about the genetic link, my mother in law said that my husband used to clear his throat constantly and this lasted until he was 8-9 years old but my husband remembers he used to do this in highschool as well (probably less obvious). But both my brother and my husband had a few things going on which were constant, while with my son things feel so fluid, like the tics he has now have nothing to do with the ones from 6 months ago, which is why I am in constant fear to how things will look in the next 6 months.
You probably read, like I did, that tics get worse through puberty, but your daughter’s case so far the opposite has happened. Do you think that this is maybe due to the fact that people who participate in these studies tend to be on the more severe end of spectrum, and people who improved or remained mild to moderate are less likely to be part in studies?

[mert]

I think, which the last researcher I talked agreed, that tics, OCD, ADHD etc are part of the same spectrum. So may (or may not) find some traces of OCD within tics. 
 

However looking at the way you describe, those are not clear signs of OCD. Clinical OCD will manifest itself strongly and you would notice stronger urges , like orchestrated actions, sticking to a routine frantically etc… 

Looks like all members of your family recovered to a point that it doesn’t effect their lives. That’s the most likely outcome for your children. 

There aren’t very good long term studies that document the trend in tics on individuals, due to several reasons. Tics are not fatal and it usualy does not justify a 10 year long expensive study. Also measurements are very subjective and 30min sessions at a random time each few months will hardly be a good data point. So it gets worse at puberty is also not proven. There are other studies that show tics usually go down year after year after the peak. 
 

Tics rotating is a good sign, not a bad sign.  And it’s also very common. Out of all people I talked I didn’t see a child with a fixed set of tics, they al rotated. 
 

I know the feeling of looking for signs of tics continuously and getting devastated a million times a day, breaking me to a billion pieces.  
 

Accept that tics are here for a while, you will see them. There will be very bad weeks and wonderful months. But they will most likely be there for a while. Slowly accept this , you may need help , let people around you help you. Even if you feel you don’t need,  still seek help. No need to fight alone. 
 

Don’t let tics mask, how wonderful your kids are, in your eye. Never stop making them feel that they are wonderful. 
 

There is no way they will be able to stop the tics. There is no benefit making them anxious or guilty because of the tics. It just will make things worse. If your relatives grow out of them they will also. It will tale time. 
 

PS : My daughters tics elevated a bit, far from the peaks we had experience but still above what it was based on 6 month average. It does effect me, I can’t stop that. But I am trying my best to ignore and focus other things in her life as I know this will pass, not tomorrow but in 3-4 weeks, if I ignore, if I don’t and she understands I am following her tics , it will take 2 months. 
 

 

 

 

[Miruna]

@mert You really gained a lot of perspective after going through this for so many years and I really appreciate still reaching out to desperate parents in crisis. I would love to read the study saying that tics tend to improve year after year after the peak. The burning question though is when do you as a parent know id the peak passed or it is yet to come?  

[mert]

On 5/4/2024 at 2:35 PM, Miruna said:

@mert You really gained a lot of perspective after going through this for so many years and I really appreciate still reaching out to desperate parents in crisis. I would love to read the study saying that tics tend to improve year after year after the peak. The burning question though is when do you as a parent know id the peak passed or it is yet to come?  

Hi, 

You can find below the link to two studies from the same team. I had a couple of email exchanges with Mr Kevin Black, who was leading these researches and his view at that moment in time was, if it's only tics with no comorbid issues, changes for improvement is higher.

As pointed out in the introduction of both research papers, there are a lot of contradiction between different researches. I read several papers and I can concur that (funny enough there is a paper dedicated to why there are so many contradictions between researches about tics) 

Most researches focus on population with TS only and usually involve children whose parents were already seeking medical attention. 

I strongly recommend slowly reading both papers in turn, 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850871/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8223879/

At this moment in time , I think there is no way to know exactly when a child will reach peak point and start improving as there are cases where things returned worse after several years of remitting. 

However my understanding is , if your child do not have Comorbidity issues (or severe Comorbidity issues) even after a few years of tics ,  and you don't have a family history of TS , chances for improvement is significantly higher, although as we are all witnessing total remit is rare in childhood. 

By the way as the result of EMTICS research a lot of amazing papers have been released on keeps on getting released, those are also a gold mine for those seeking more information, though prepare to be a bit confused.