evemac

Bon Ami - been around forever! Eve

I remember these evenings. Heartbreaking. Here's what we did; sometimes they worked and sometimes they didn't, but they are worth a try: 1. Calms Mg is wonderful and immediate. We did the powder, but luckily they have gummies now. 2. We did a brush Wilbarger protocol for sensory integration (taught to us from our OT). You can Google it and you can buy the cool brushes online. You literally just brush all over their arms, back, legs and let them tell you in they need more or less pressure. This gives your child some input that may help regulate them and get their nervous system to slow down. There was another joint release movement we would do (also from the OT), but I cannot remember what it was called. 3. Variation on meditation/relaxation: my mom would have Harrison think about relaxing, beginning from his feet and work all the way up to his head. She would say, "feel your feet relaxing, now your ankles", etc. My heart is there with you. There were nights I just cried because I couldn't figure out how to help him. The happy ending is that he is now 19, tics just slightly every now and then, played football in high school and made good grade and good friends, is now in college, and is one of the most wonderful human beings I have ever known. Hang in there. XO Eve

Hi Deanit, I am sure you are looking for support ( I remember being where you are right now), and how I was searching everywhere for answers and help. Here's what we did: 1. Our pediatrician said the tics were nothing to worry about. I went ahead and made an appointment with a pediatric neurologist. Look for someone who specializes in movement disorders. We did medicate for a number of years. 2. We changed our son's diet and went to a naturopath (who also happened to be an MD) to do major testing (blood workup, etc) to see what sorts of sensitivities our son had and what sorts of supplements would support his system. No gluten at all for years. Limited processed food. 3. We looked for triggers: Chlorine, lack of sleep, when he would start to get sick, stress, excitement. 4. We had a regular routine with a chiropractor, OT and did biofeedback. 5. I was lucky to have a TS support group in the city where we lived when he was little. 6. We talked to the schools and asked for a 504 (this is primarily around dysgraphia and extended time). This will most likely follow him to college. 7. He is athletic, so he did soccer and now plays football. Look for strengths that your child has, and really focus on those activities and social avenues. He will be a senior in high school next year, and it has been a long journey. He is doing very well - still tics sometimes - but he is really a well-rounded, wonderful human. He did go through some for some years, but he is stronger for it in my opinion. What I remember is that sometimes certain things would work, and other times they wouldn't. Keep trying and be patient with your son's system. Sometimes it takes a while for their body to reset. Good luck! Eve

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.

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 remember that we are all complex creatures who have genetically inherited strengths, talents and qualities that can make life a little more challenging. And that is true for all of us, whether it manifests as something extrinsically or not. Hang in there. We understand. Eve

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 is important to our children with TS. Unfortunately, people still don't really understand it but the best news is is my son has gone through this and is a strong academic and athlete and what's even more important than that is that he likes who he is! Keep up the good fight. I remember crying at night with him when he was ticcing so hard he couldn't sleep. I have been there! You are not alone! Eve

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

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

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!

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.

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

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

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

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.

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.