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mert

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Everything posted by mert

  1. I hear you. We had gone through the same, after 2 years of cool down, we had a peak 2-3 months ago. And now it went away almost 90%, we are not back to the lowest levels but close. In the mean while I noticed that, while she looks though as nail outside she is disrupted if I get angry with her for a reason and she thinks our relationship is hurt (internally). That’s my guess by the way, as a parent. Then her tics get elevated rapidly. I am now focused on controlling the way I get angry and emphasizing that even at my angriest moment she and wify is my number ones and it’s quite ok that we have these kind of moments now and then.
  2. I’d recommend controlling anxiety if there is any and spending time with activities that require his/her focus (activities that don’t increase anxiety, ie he is not afraid of loosing the game etc) Tics are very personal and it’s not easy to estimate how long this tic will be around but my experience with ‘eye’ related tics are, they are among the ones that stay the shortest time. Usually they go away within 1-2 weeks (in our case) , but they usually did come back couple of times before they went away for a log time. But again this is my experience. PS: you may already know, but make sure that you really really ignore the tics. Don’t let the little one catch you looking for the tics.
  3. I value your experience and since (unless allergic or renal issues present) mg is harmless, it can be tried. Given your positive experience I might also retry it in the event of peaks. (I read the hypothesis though wouldn’t consider it as a clinical trial, but still valuable material) I did not read the tic trigger book, so won’t be correct if I comment. My experience is, which is anectodal and should not neccessarly be same for anyone else, tics change so as some/most of the trigers. And for my case I figured out that unless it causes extra stress, repeated triggers can shorten the duration of the tics. ie, Swimming googles caused a lot of tics around the eyes and I tried avoiding them as much as possible. Only after I gave up avoiding them tics went away. Same for voleyball , she had specific tics that started immediately when we started playing volleyball, i kept on playing and they went a way in one week. Thanks a lot for sharing your thoughts, I think we can learn from each other.
  4. We can agree to disagree, however I think we are saying the same thing with different words. I don’t say anectodal experience is not useful, I think, without a controlled and peer reviewed research, trying to conclude from anectedol evidence can lead to significant problems. And if you are referring to the research paper from 2009, what I so far found, what people refer is not the results of the paper as the paper mainly describes the ‘plan’ for a trial, but a paragraph where author calculates the minumum number of patients required based on previous phase II clinical trail of 10 patients only (I couldn’t find any reference to that particular trial, but 10 patient is too little to conclude a result anyway) if you have anylinks you can share about this subject I can read them and change my mind and start using magnesium again.
  5. Hi Chemar, by elasticity I mean ‘tics changing form’ rather then waxing and waning. While I value anecdotal evidence, I find it pretty dangerous as it will most of the time mislead. (Ie, thousands using magnesium pills) There is a reason modern science and medicine has built rules for proper research.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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
  12. Get any help you can. I understand you fully and we've been in the exact situation multiple times. I can not talk for your child but I know my daughter can catch me easily if I watch her tics and this makes her nervous and also negatively effects the tic frequency. I still get caught time to time, but I thought myself to make her comfortable during the peaks as it's the not the easiest but shortest way out for both of us. I think stress certainly has an effect. Under negative stress I see the tics rise quickly. I try to apply positive stress as much as possible, like a physical competition , memory games, any thing that would direct her concentration to somewhere else. Believe it or not, every 30 sec is not really a high frequency. I had so much worse on some tics. Just today, she started blinking both eyes same time (not like blinking but like closing and opening) , we had this tic couple of times before. Sometimes today it got really frequent. A few minutes after I told her, it might be better not to use iPad as her eyes look tired, she came and told me, I don't want to do it (close eyes) but I also want to ... trying to explain herself. I said, it's quite ok and to do whichever she feels better, closing or not closing and added it will go away in a few days maximum anyway (that's some good will) Back to my first sentence, get any help you can, if you are not well, you can not help.
  13. Almost every child (with tics) I know of show same behavior when watching TV. We had the same, and we dropped the TV to 15 mins a day (most days never opened and only allowed content that would require some active listening/watching like documentaries, competition and she needed up being an F1 fan) and switched to board games, family games etc, for the first 1.5 year, then we slowly increased the amount of TV allowed, but because she had little TV around 5-6, she does not go for TV much to be honest even we would let her.
  14. The old information regarding tics, that they will pass in a year or so and if not it's serious is 'old'. Most new studies, I think I linked some of them, show that tics do not pass in a year. The professor who was running a long term clinical trial was kind enough to answer my question and he said that on average he is seeing improvement year on year but he only seen few of the subjects free of tics at the 3rd year. (His research should be coming to 4th year) And he also agreed with me that Tourette naming is pretty old and meaningless. Tic's are the movements that are completed to satisfy an urge. An urge is a very complex thing in it self. An urge say something/make noise might be evaluated as vocal tic but coughing is certainly not a vocal tic. An urge can also be related to a thought (which leads to OCD or similar disorders) Throughout the years we had probably 100 different tics. Too many to write them. almost anything you can imagine, from jaw opening to eye movement to small jumps when walking to more regular stuff like head noding , tapping etc... Some are a bit more persistent but almost everyone of them replaced with something else during the course. The study I mentioned, which should be linked on one of my recent posts, is the only glass ball we have. At some moment I should search if the newer version of the study is released. If you can find the newer version before me please drop a link. I used to track frequency/intensity of each tic on an excel and that really helped me understand the frequency and peaks etc... As I said, I focused all my efforts on making here more confident with here self physically and mentally without pushing here, with right amount of challenging. What I see is she is quite happy to be in top physical shape and be competitive on every sports (as a side effect) and when she is involved in these activities she would never present tics.
  15. 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.
  16. 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...
  17. 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)
  18. 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
  19. 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.
  20. 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
  21. 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.
  22. 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.
  23. 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.
  24. 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
  25. 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
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