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mert

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mert last won the day on February 24

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  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.
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