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Everything posted by evemac

  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 My answer is based on research that may be outdated, but I read that it may be synaptic pruning due to outdated/no longer needed synaptic connections as the brain matures during and post adolescence.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
  16. Have you ever considered cognitive behavior therapy? I would like to try this when my son gets older, so I wonder if this would be a possibility for you. How about alternative forms of dealing with triggers? We go to biofeedback and a chiropractor (used to be once a week, expense limits us to once every 2 weeks), and we have done blood tests to rule out "trigger" foods: gluten (big trigger for lots of TS people), soy, sugar - we limit this as much as possible. We have seen a decrease over this last year, and I do attribute this to many of these interventions. Best of luck to you! Don't g
  17. Hi Shelley, I definitely saw an increase in tics when we brought home a kitten, and we did give it to my mom after about a week. While I think we could've tried a number of things to reduce the dander, etc., it just seemed like any potential trigger after what we have experienced with tics and having come so far in reducing them was going to be removed from the house. We saw this again after committing to watching the class guinea pig this summer. Sure enough, after a couple of days in our home, I saw an increase in my son's vocal tics. I know my response is a bit late, but I thou
  18. We've also seen an increase in this first week of school (new one: fast blinking). I totally think big events can trigger tics. I have started adding Mg as well, but it's too early to tell if there's any change yet. Good luck!
  19. Blue Jays, Have you tried any alternative treatments? My son does take meds, but I think is successful because of the supplementary supports he gets. He goes to the chiropractor (might be good for the physical pain in your neck and arthritis as well)and biofeedback each 1 time a week. He also had bloodwork done to determine food sensitivities, so we avoid those possible triggers as much as possible (diary, soy, gluten, and sugar). When he gets older, I am interested in seeing about cognitive behavioral therapy. If you're interested, Google CBT and Tourette's; I think there are some pret
  20. Hailey's Mom, I am so sorry about your situation, and I would like to write not only as a mom of a son with Tourettes, but also as a Special Education teacher in 6th grade! Sounds like you have some accommodations under 504, but if there really is a possibility of Hailey having autism/Asperger's, you may want to go ahead and get the full assessment for special education. If she does qualify, there are more services offered (or should be even though you live in a small town) for her. A parent requesting testing from the district will have more force that if the teachers attempt to get the
  21. Hi Kristen, I agree with all the other postings. It confirmed what we already suspected (gluten, dairy) and added a few surprises: pineapple, mushrooms, pickles among the culprits. I would recommend it. Eve
  22. Hang in there! So many of us can empathize and remember that first panic when hearing "Tourettes". I agree with Chemar that finding potential triggers is an important first step. My experience is that foods are HUGE! We're off gluten, soy and dairy (this was done in combination with blood tests to determine sensitivities and our own experimentation); biofeedback and chiropractic visits are also part of our treatments. I know it's overwhelming, but know you have support here! Eve
  23. Our oak pollen is way, way up here, and I definitely notice an increase in my son's tics. I mostly have a "do not introduce things into the house" policy. All shoes stay on the porch or I wash them, I make sure he takes a shower or bath as soon as he comes in, clothes are immediately taken off and left in the laundry room. I clean the floor and other wooden surfaces with Murphy's oil soap and 7th Generation cleaning products. Doesn't make them go away completely, but I really try to keep the inside super clean. I have tried Allegra for when it's really bad, but I don't notice that medica
  24. Our son was diagnosed 2 1/2 years ago with a general physical exam to rule out other possible problems(reflexes, etc.), but I believe the actual diagnosis was based on our observations which we communicated to the neurologist: at that time, he didn't have vocal tics, but would walk around while manipulating his fingers when he was bored, waiting in line, etc.
  25. Hey Alan, I agree with Chemar; my son never tested positive for any allergens from a pediatric allergist, but when we went to a naturopathic doctor, they were able to detect food "sensitivities", so certain foods have been eliminated from his diet. We had already cut out gluten. After the naturopath, we eliminated soy dairy, and yeast. I think taking one particular reactive food out of the diet can help you figure out culprits. However, it's my understanding that it can take weeks to completely eliminate the residual effects of that food from the person's system. The naturopath also wo
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