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evemac

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  1. My answer is based on research that may be outdated, but I read that it may be synaptic pruning due to outdated/no longer needed synaptic connections as the brain matures during and post adolescence. My son just turned 16, and his tics are now so few and far between after merciless tics through his early childhood. He has quite a few yesterday, and I realized that the only time I see them now are when he is sick (which is what it is) or very tired.
  2. Sunflower78, YOU ARE NOT ALONE! There is a community of support who can and will listen and understand what you're going through, direct you to resources, tell you what has worked for them (elimination of gluten for us for sure), and give you hope. That was about the same time my son's tics started, and it has been a long, fascinating journey. If this is any comfort, he is presently a thriving 15 year old who plays football, is the deepest thinker I've ever met, kind and empathetic to others, and a most marvelous human being. As far as the guilt goes, that is tough, but I try to remem
  3. I know it's hard not to despair, but my son who is now 14 was diagnosed when you was 5. We did so much for him: diet/vitamin protocol, Occupational therapy, chiropractic work, meds, CBIT, and I would say to some extent, all of these interventions helped. He feels pretty comfortable talking about having Tourettes and while he did have some difficulty with peers on occasion and I had to actually request a 504 by 8th grade to deal with the dysgraphia, I also give his teachers a well written article on disinhibition and what that could look like in class. I think advocacy and self-advocacy
  4. Hi Suerexhouse, Sorry this is an extremely late response, but I am a total believer that gluten and the exclusion of it will effect onset of ticcing. My son in 14 now, but when he was your son's age, there was a direct correlation from an increase in tics and eating gluten earlier in the day. He is still basically gluten free, although we've loosed up over the last couple of years. I wonder if you tried it? I would say you will definitely need to give it more time that 5 days. Good luck! Eve
  5. Hi Sarah, I agree with everything that Sheila stated in her post. Certain foods in my son's diet, particularly gluten, really seemed (still seems at the age of 14) to trigger his tics. The cleaner the diet, the better! Reduction of stress, plenty of sleep, and for our son, making sure he doesn't go too long without eating all seem to help him maintain homeostasis and have less ticcing. At the first sign at some unusual hand twisting at unusual times, I brought my 4 year old into our pediatrician who stated that he was fine. I was pretty firm in asking for a pediatric neuro
  6. My son did this when he was in 6th grade. His therapist was excellent, but honestly my son was not mature and/or patient enough to practice the compensatory behaviors. I thought it might be better to revisit when he is a bit older. I think it depends on the kid!
  7. I'd be interested to see what others might have to say on this topic. My TS son will also be driving in a couple of years, and I wonder what might happen while he is ticcing and driving. The first thing that comes to mind is to get some therapy using CBIT. I am not a therapist who specializes in CBIT, but basically it is used where a person identifies the premonitory urge before the tic, identifies the tic and the muscle groups involved in the tic, and then (and I am simplifying here) substitutes a replacement behavior for the tic; in this case, it would be another movement or behavior that
  8. I didn't consider having any accommodations for him yet, but perhaps I can inquire about a 504. I am pretty sure from experience that he won't qualify for SpEd. Not sure how to do 504 requests. Thanks for the suggestion! Eve
  9. Hi All, My 5th grader who has TS is really struggling right now after about 4 weeks of school. We had some difficulties last year, but they seemed to have calmed down as the year progressed. There is definitely been a big difference with how Harrison is doing with homework. After a pretty uneventful August, school began and with it, a serious dislike to touching paper. As the school year has progressed, it seems that the tics are worse every day, and now homework is becoming almost impossible to begin and/or redirect to finish. Last night, he had a full meltdown so I let him rest (he a
  10. Hi All, My son had been on 1 mg of Risperidone 2 times a day; our new neurologist agreed that to take him off this drug was a good idea as its potential side effects were concerning. Well, he's been totally drug free for 5 days which I love, but the tics have definitely increased dramatically...I'd say about 30 percent. And of course, we are getting ready to fly tomorrow and that tends to be one of the worse environments for him. He is also taking a good dose of Vitamin C, Calcium, a blend of amino acids, zinc, a multivitamin and a vitamin B cream. Part of me wonders if I'm overdoing t
  11. Kristy, As as special education teacher and a parent of a child with TS, you might want to touch base with the teacher and educate him or her about tics in class so that she or her can manage that situation in class. Because this syndrome is not as prevalent as a learning disability or something like ADHD, many educators don't know what to do or how to handle a child who tics in class. Regardless, every child has the right to feel comfortable in their classroom.
  12. I wanted to address to food allergy issue. We had a pediatric allergist test our son a few years ago, and he reacted to only 1 (yes 1) grass which blooms in the fall. However, when we went to a DO and had the blood testing done for food sensitivities, he was incredibly reactive to a huge amount of foods, which we now avoid as much as we can (the worst without a doubt is gluten). I still feel that when it's humid and the mold level is up, his tics increase, no matter what that allergist says! Most importantly, I think that those with TS have incredibly sensitive "systems", so see what you ca
  13. Hi Skyler, I agree with Chemar on food reactivity; I would also look at other triggers like air quality (my son tics more when mold is high). We use an air filter in my son's room and cover his mattress and pillows to block dust and allergens. Clean with nontoxic cleaners like Seventh Generation. Cleaning up your living environment may help. We also go to a chiropractor and biofeedback, and my husband and I believe this is helpful. You may want to check in with other posts regarding Cognitive Behavioral Therapy. I believe this deals with the issue of feeling relief once you compl
  14. AS the mother of a son with Tourette's as well as a Special Education Teacher for 15 years (and believe it or not, a licensed attorney), I have a couple or responses to the school issues. First of all, if your son has a qualifying eligibility such as OHI for the ADHD or a learning disability, the school is mandated by federal law to provide the correct services and accommodations to make him successful at school. My son is 8 and at a Montessori school, so I haven't dealt with this personally yet, but other parents tell me that they have 504 services for their children which allow for certain
  15. Believe me: I have been there! Welcome to a fantastic group! Recommend ruling out food triggers. We went to a naturopath who actually works with an MD; they did a blood analysis and listed foods that my son's system was "senstive" to, including soy, dairy, gluten (this is BIG - we can actually see tics appear within 30 minutes of eating wheat!). We also do biofeedback and go to a chiroprator. I have to admit we also do meds, but eventually expect to wean off of these. Look for a Tourette's support group near you if possible - and visit the TSA website for further studies, information, w
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