mert

Most of the disorders we are talking about boils down to 'urge' control, whether it's in the form of a physical movement , or a need for stimulation or thought or a will to perform a choreography. Some researches state that ability to self control the urge , like being able to stop for extended amounts of time is a sign for better recovery, which I believe and it was one of the things I tested with my daughter, if she was able to stop a repeated movement at her will. My daughter was no different, when I was talking about Santa, at 3 years she calmly asked me if I knew that she knew Santa is not real (to cut the crap short) I think challenges, sports or academic help them a lot to gain confidence, be ahead of the pack (so they feel confident of themselves) and also keep them busy. There is no way to prove it but gymnastics I think helped us a lot and my brothers ons does archery (both at national levels now, accidentally as we were just trying to keep them busy and add new skills that would help them tackle challanges) I think this gymnastic thing also kept me and my wife a bit busier and involved which also helped us keep it together too.

‘disorders’ are a wide spectrum. And there are naturally cut ofF’s for one to be diagnosed to having a disorder. if your son is below the cutoff (even if he was mildly above the cut off) of anxiety disorder , that I think means he will get better with age. Usually children who are more ‘aware’ and ‘intelligent’ can be anxious in earlier ages as their ability to think and worry is more advanced than their ability to control their feelings/mood. And I think that this will also help with the tics significantly. It does take time. In our case it took close to 7 years and I can not tell you that it’s over, we can have a peak tomorrow.

At 1.5 years, I wasn’t also able to recognize a downward trend as peaks were pretty high and I was always worried like you, lost more than 20 lbs back to my high school weight. Slowly things started changing, around 3.5 years into it. And I was able to register a clear downward trend by year 4-5 but still with peaks. Eye blinking is least harmful and most repetitive tic with highest frequency. We didn’t have it much (only couple of times) but my brothers son had it a lot. (Last month I stayed with them and had spent lots of time, all was well the little guy) However we did have far worse looking ones like head movements. I’d take eye blinking instead of them any moment. They also went away. At the first years a new tic would usually stay 6 weeks (there exceptions) , you would first see it 1-2 times out of, than it would increase gradually , peak, stay at peak and than rapidly decline. However we had some tics stay for months. Later cycle started to be a bit quicker , like 3-4 weeks on average and peak of a tic was milder on average. This was noticable at around year 3-4. As we had written here many tikes. Comorbid issues are more important. Tics tend to go down one way or the other. I’ve also noticed (or they told me) some of my adult friends have tics, almost unnoticeable and they only surface when they are anxious.

Hi, We had a similar pattern. When waned it was never completely gone and some times it come back with more tics, increased frequency. But slowly intensity of the tics lowered. The movements got less intense even if the frequency or number of tics were the same. We still had peaks where intensity also spiked though, so it wasn’t like a continuous downward trend. It’s what make it difficult for us anyway. After 6.5 years (I think tics started before that but weren’t easly detectable since she was too young) , only now I can say I can’t feel the tics. 4-5 months ago, they were there, I’d see them once a while. Now I don’t feel’em. They could be still there, they are probably there, but I am not trying to actively find then. If I can not casually detect them no one will abd it won’t effect here life. That’s good enough for me. Btw, I’ve seen tics on several other children, including my brothers son, and on all cases the grand trend was downwards (with a lot of peaks). I am hoping/knowing that this will be the case for everyone on the thread.

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.

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.

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.

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.

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.

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.

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.

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.

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.

"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.

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.