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evemac

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  1. 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 neurologist appointment even though there didn't seem to be a cause for alarm on the doctor's part . I am happy that we did, and even though my son is no longer on meds, his neurologist is a huge part of his life and a person who just really gets him and what it's like to grow up with TS. Also, if you have the resources to see a homeopathic doctor who can do more in depth testing (if you can find one who is also an MD), that is also beneficial. This was helpful as we could see where he had mineral deficits and also which foods he has sensitivities towards and to avoid them. You can also do this with an elimination diet if this is not an option for you. Other avenues we have pursued over the years are chiropractic care, occupational therapy, and biofeedback. I think to some degree, these all helped our son. Know you are not alone in this journey. We all understand the initial stages as you manage this with you son. Eve
  2. evemac

    CBIT

    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!
  3. evemac

    Son with tics and driving

    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 would use the same muscle group but could be appropriate while he drives. If you can find a therapist near you to help with this process or you feel like it is something you son could do on his own, then that might be a choice.
  4. evemac

    Homework and Bad Ticcing

    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
  5. 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 actually fell asleep for about 30 minutes), but them after delay after delay, I finally figured out that he had a rather large written assignment accompanied by another meltdown, an "I'm sorry, Mom", and then I finally help him write out his sentences to complete the work. He bangs and/or hits the paper or table about every 7 seconds as he is working. I am trying a weight jacket to calm him down, OT brushes from years ago, but I have not figured out how to find the "relax" button for him yet. I am also a special education teacher, so this probably affects my concern about this. I am trying to tease out what is tics causing him to stop and start, what it an attention issue, what is a sensory integration issue, or is it all of these things together? In any case, I would appreciate any input anyone might have about how they have dealt with a similar issue. I do not really want to cut back on work for him as he is a very bright child, but he is also really unhappy and I am feeling like perhaps I need a tutor or some additional help to support my son. Thanks for any help! Eve
  6. 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 the supplements, but that's what was recommended by an MD who did a blood analysis to see what minerals were "missing". Any suggestions? I am also seeing an increase in his frustration level which is concerning, too. I really wanted us to be able to get off the drugs, but he is really struggling and so am I! Thanks for any help! Eve
  7. evemac

    What would you do first?

    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.
  8. evemac

    Food allergy Question

    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 can tease out in the way of food reactivity.
  9. evemac

    I Have Developed a Tic

    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 complete the tic. Best of luck to you! Eve
  10. evemac

    Learning Disabilities

    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 accommodations such as leaving the classroom when ticcing is interfering with their learning, taking a test in a quiet room, etc. However, if a child is SpEd and NOT 504, the district is required to go beyond that and ensure that the student is being educated. I would encourage you to continue to push the district on this matter. I have worked the spectrum - from low functioning delayed developmental students to children with emotional disturbances- and I believe if you have good teachers, you can make progress at school. Also, if the staff doesn't have experience with students with Tourette's, try and work with them: give them literature, etc. Don't give up!
  11. evemac

    Finding a Dr

    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, ways to support research, etc. Eventually I would like to do Cognitive Behavioral Therapy with him (Google to get more info on recent studies on this and TS). Whether the tics go away or not is a difficult question to answer. I hope for your grandson that he finds ways to cope, reduce the tics, and gets the emotional support to feel empowered as he deals with this. Best of luck to you!
  12. evemac

    Any advice?

    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 give up!
  13. evemac

    Cat and tics

    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 thought that I should comment as I really almost posted the same question several months back! Eve
  14. evemac

    Back to school tics

    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!
  15. 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 pretty promising studies done recently in helping with Tic disorders. Depending on your insurance coverage, some of this may/should be covered. Try the Tourette's Syndrome Association website: http://www.tsa-usa.org/ This is how I found our local support group, and I HIGHLY recommend it! Good luck! Eve
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