ladyd

Thanks again for the feedback. Just got back from a behavioral pediatrician, and I feel discouraged. I knew I would. She made it sound like diet changes are futile.. If anything, she said no screens is most effective. But nicks tics are so much worse after eating gluten and dairy yesterday. Glad I'm going to the naturopath at 530. Hoping she can give me more perspective. The ped recommended habit reversal training.

Hi again, I'm not certain about the bagel, but yes, there was definitely dairy on the pizza. My mothers instinct tells mf that dairy is an issue for him; interesting because his diet has been about 90 percent gluten and 10 percent dairy. He's such a picky eater, so we've just been giving him the organic versions of the mostly unhealthy foods he eats. Pizza, bagels, balogna sandwiches, etc, but more. It's probably because there are sensory issues involved with the disorder. Are eggs a problem for your son? They have been our healthy go to, but the other day I noticed him ticcing when we put an omelette in front of him. Thanks so much for your feedback. Ps: I hope we don't miss our appointmects today: got almost a foot of snow overnight!

ozimum - did you have a similar experience? because there's a part of me that worries that this is all wishful thinking, that the GF diet is working, but I have seen proof, and then, tonight, just before he fell asleep, my son said to me, "Mom, I think my tics got worse today." so that sort of solidified the connection. thanks for the cheers!

just wanted to give an update: our 8 year old son's tics have been bad since the beginning of january -- the last two weeks have included a head nod, shake, eye squints, and the usual add related issues. we got a meeting with a behavioral pediatrician tomorrow -- got a last minute cancellation so we don't have to wait until april; tomorrow we also meet with a naturopath, so it should be interesting to compare the two perspectives. until we get the official diagnosis, and what i assume will be juxtaposing recommendations, we've been using recommendations i found on this board and in sheila's book: no screens, and no gluten or dairy. wow. after 24 hours with no gluten, we saw a difference. within four days, the tics had been considerably reduced in frequency and severity, and, well, it's just been like our son has emerged from a brain fog. he did all of his homework yesterday without me hovering over him (that's a first), asked to do his next homework when he was done with one piece of it, and his handwriting was even noticeably improved (i didn't expect that -- he's gotten OT for years.) but then...we ran out of gluten free options. packing school lunch has been very difficult, and the chicken we've been sending him in with has come right back home, untouched (he's a very picky eater.) but all of his snacks have been gluten free, too. but, like i said, we ran out of gluten free pancake mix, and chicken nuggets, and, well, we didn't realize how much food we'd need to get through the week, and a trip to the preferred natural food store (am i allowed to name them in the forum?) wasn't possible when we realized, so, out of desperation last night, i made a gluten free pumpkin bread with a mix i found. but nick wouldn't eat it. so my husband gave him a bagel for breakfast. not a gluten free one. he immediately started ticcing. then he didn't eat the lunch we sent in (more pumpkin bread, with various gluten free snacks), so he bought school pizza. not gluten free. then he went on a playdate. they played some video games, he ate some cheese-its, and came home ticcing again. if i needed proof of the efficacy of the gluten free diet's effect on TS, I have certainly received the proof I needed. Now I realize that nothing will be the same again, because we have to be absolutely vigilant about everything our son eats (and continue to keep him away from screens. which is a little sad, because he so infrequently plays video games to begin with -- i don't want him to feel punished. but it's just not good for him.) Even though he has been tested for food allergies, and has been shown not to have any, it's clear that there is an intolerance there. i hope we can get him back quickly to where he was yesterday, before he ingested the products with gluten in them. today i went to a local natural food store and stocked up to hold us over until we can get to the preferred food store this weekend (unfortunately, the closest one is a half hour drive, but it's worth it, since everything there seems so fresh, with many choices.) just wanted to share my experience thus far.

Thanks Chris and al... So here's an update: we are starting with diet, since we can't get an appt with a ped neurologist until march 1st. We've tried to cut out eggs, most gluten and dairy. Nick has been eating a lot if chicken cutlets, using homemade Italian dressing as a substitute for egg, and just a bit of breadcrumb, which probably defeats the purpose of trying to eliminate gluten, but we're newbies. He's a very very picky eater. He's also been eating sweet potato waffle fries (I believe sweet potatoes contain mg) and some shrimp. Even though I know this diet has a long way to go, this, combined with no screens at all, has had a positive and calming effect on him. He is definitely still ticcing, but they seem less frequent. Or maybe it's wishful thinking. Stress over homework tonight seemed to make them worse. I had Nick allergy tested a year ago and it showed no allergies at all, but that doesn't mean he doesn't have sensitivities, right? I made an appt with a naturopath, I don't know how skilled she is but she says she has worked with plenty if ts kids before. Do you know of anyone who's had experience with the handle institute? I'm eager to give them a try. And yes, like you, I am hoping to work with medical professionals who think outside the box. Will also look into the vitamins you recommended for certain. Thanks so much for all the advice.

thanks so much for your feedback. i haven't noticed any pattern to the tics, they always appeared out of nowhere, or so it seemed, but i have noticed the mildest of runny noses does seem to accompany the return of the tics (when his tics first started at age three, the doctor would alternately say it was a tic, or say it was a sinus infection, and prescribe antibiotics, even though he didn't seem sick, maybe to make it seem like he was doing something? if anything, antibiotics seem to make him more tired, but it's been a very long time since he's been on any, probably over a year. he's a pretty healthy kid, thank God.) but your other questions raise a red flag to me. he has handwriting issues, and has gotten OT since kindergarten (not that it's helped much); i noticed that his handwriting seemed worse before this latest flare up of tics, which are far and away the worst his tics have ever been. he struggles very much in math, too, and has been in remedial classes for math the past two years in school. on the other hand, he is an articulate and advanced reader, and a very sweet, empathic and sensitive boy. interestingly, again, nicholas hasn't been sick (has the most minor of sniffles, as i stated earlier) but his brother (who is five) has had a bad cough for about two weeks. noah has also been prone to strep (tested negative for it at the doctor's visit for the cough). nicholas never received the flu mist, or any other flu vaccine. now i'm really not sure where to begin. with a pediatric neurologist who specializes in tic disorders, his pediatrician, or go right to the pandas doctor? does my son's course seem familiar? i'm going to go back and read the articles you mentioned. thanks again so much, to all who responded, for your time.

hi everyone. i've been lurking on this forum for a few months now, seeking knowledge regarding my 8 year old son's tics. since the holiday break at school, our son's tics have noticeably worsened, and have become quite a concern. we see an educational psychologist who has unofficially diagnosed him with tourettes and inattentive add. she has referred us to a 'trusted psychiatrist'. however, this is not a route i wish to pursue, because i suspect he'll recommend medication for the tourettes and/or the add, and i'd like to really exhaust all other options before going that route. here's some background on our experience thus far: nicholas was born by c-section. his developmental growth was typical, and he was a pretty healthy baby. just before he turned three, he had a strange medical event. he announced to me "mommy, get my [toy] car, i too dizzy," and then he started to walk around like a person who couldn't maintain his balance. we rushed him to the ER. he vomited a few times and experienced this lack of balance when walking for about 24 hours. he stayed in the hospital for a few days, had a contrast MRI, which showed a healthy brain -- no infection, no abnormalities; all other tests, including blood tests, came back normal as well. they said it was a virus, and this "dizzy event" never happened again. not sure if it's worth mentioning but he had strep followed by roseola many months before this occurred. a few months after this hospital stay, which may or may not be related to his tics, he started with a sniffing tic. he'd take deep breaths over and over through his nose. the doctor said it was a tic, nothing to worry about; that tic went away, and small tics reappeared over the years, but they were mild, and only we seemed to notice them. but that has changed recently. returning to school after the break brought his tics to a new level. he blinks, grimaces, nods his head up and down and side to side. i try to keep organic, but he has always been a very picky eater so his diet does include a lot of carbs and dairy (bread or pasta and cheese). i'm not sure what to do next. pediatric neurologist? naturopath? i really want to go to the HANDLE institute right away but my husband wants to wait for an official diagnosis (to tell us what we probably already know -- that he has tourette's.) where does one begin? it's so distressing to watch your child tic. i just want to jump right in and try to help him. thanks in advance for any advice you can give. is it possible that he could have PANDAS now, five years after this initial event? he has had only a few cases of strep in his life. do you have any pediatric neurologists with good knowledge of tics, tourettes, and PANDAS in the long island/NYC area? thanks in advance!

hi chemar.. thanks for your reply. in response to your questions: yes, my husband's cousin has tourettes and my husband's brother has been known to have tics all his life. (mild, but consistent.) i don't remember if they ran a test for strep when we were in the hospital, but it seemed like he got a "full workup." i dont' know if this would be related, but i do remember several months before this hospital event, my son had strep, followed by roseola. but there was a very long span between that event and the dizzy event -- it could have been a year. we do live on long island -- plenty of lyme here. he's never had a tick bite that i've noticed. i can't relate any episodes to the vaccinations -- we followed dr. sears' schedule, had only one, maybe two vaccines per visit, even had the MMR divided.... i don't think we have a mold problem in our home. i'm very allergic to mold and have not had any issues. we are starting to try some food elimination -- today we're focusing on dairy, and have eliminated screen time (not that we had much screen time here; even with the more mild tics he had previously, they seem to be a trigger, but there was quite a bit of wii and DS playing over the christmas break...) we just came back from a basketball game and my poor child was ticcing all over the court. he's so happy, though, he really does seem a bit oblivious to the way the tics appear, but he did ask me yesterday how we could get them to go away. i told him we were working on it I'll copy my post over to the PANDAS board, see if they have any suggestions. In the meantime, do you think a pediatric neurologist should be our first visit? Do you have any you recommend in the Long Island/ NYC area? Thanks so much. It is so comforting to have people to turn to who have been in similar situations.

hi everyone. i've been lurking on this forum for a few months now, seeking knowledge regarding my 8 year old son's tics. since the holiday break at school, our son's tics have noticeably worsened, and have become quite a concern. we see an educational psychologist who has unofficially diagnosed him with tourettes and inattentive add. she has referred us to a 'trusted psychiatrist'. however, this is not a route i wish to pursue, because i suspect he'll recommend medication for the tourettes and/or the add, and i'd like to really exhaust all other options before going that route. here's some background on our experience thus far: nicholas was born by c-section. his developmental growth was typical, and he was a pretty healthy baby. just before he turned three, he had a strange medical event. he announced to me "mommy, get my [toy] car, i too dizzy," and then he started to walk around like a person who couldn't maintain his balance. we rushed him to the ER. he vomited a few times and experienced this lack of balance when walking for about 24 hours. he stayed in the hospital for a few days, had a contrast MRI, which showed a healthy brain -- no infection, no abnormalities; all other tests, including blood tests, came back normal as well. they said it was a virus, and this "dizzy event" never happened again. a few months after this hospital stay, which may or may not be related to his tics, he started with a sniffing tic. he'd take deep breaths over and over through his nose. the doctor said it was a tic, nothing to worry about; that tic went away, and small tics reappeared over the years, but they were mild, and only we seemed to notice them. but that has changed recently. returning to school after the break brought his tics to a new level. he blinks, grimaces, nods his head up and down and side to side. i try to keep organic, but he has always been a very picky eater so his diet does include a lot of carbs and dairy (bread or pasta and cheese). i'm not sure what to do next. pediatric neurologist? naturopath? i really want to go to the HANDLE institute right away but my husband wants to wait for an official diagnosis (to tell us what we probably already know -- that he has tourette's.) where does one begin? it's so distressing to watch your child tic. i just want to jump right in and try to help him. thanks in advance for any advice you can give.