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[ladyd]

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.

[Chemar]

Hi and welcome

 

the best way I know to try to help is to ask questions that may lead you to answers.

 

Do you have any history of TS, tic disorders etc in the family (yours and husband's side)

 

When they did all those tests in the hospital, did they run any tests for strep infection?

 

Do you live in a Lyme Disease area? Has your child ever had a tick bite?

 

You mentioned the tests showed "no infection" yet then say they finally suggested it was likely a "virus" ??? which would mean yes, it WAS an infection!

That sets off a big red flag for me and so I would suggest you also ask about this on our PANDAS/PITAND forum, which is specifically for infection triggered neurological problems http://www.latitudes.org/forums/index.php?showforum=17

 

we also have a forum for Lyme related illness http://www.latitudes.org/forums/index.php?showforum=19

 

Can you correlate your child's first episode with any vaccinations?

 

Is there any chance you might have mold contamination in your house?

 

Those are just a few pointers that I felt worth mentioning based on what you wrote.

 

There are *many* things that can trigger tics, so do keep searching for the answers.

We have a thread pinned to the top of this TS forum with some helpful info too

http://www.latitudes.org/forums/index.php?showtopic=2459

[ladyd]

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.

[Bigal]

Hi LadyD<br>We are using a doctor in NJ.  If you want to know more please send me a PM. We've been using him to rule out PANDAS and I think we have. We haven't actually visited him. He prescribes blood tests that we do here and he interprets. I believe he has a deep understanding of the issues at hand. But he is quite unresponsive. It take persistance to get his thoughts on the tests.Best of luck

Alan<br>

Edited January 24, 2011 by Sheila Rogers

[Cj60]

Hi Ladyd;

 

We started with a ped. neurologist. It was a waste of time. But others have mentioned good experiences with p.n.s, espceically those who allow themselves to think a little outside the box. It's the thinking outside the box feature that I would recommend you look for.

 

Our first line of action was diet. It's best to do this with some support. We found an environmental doctor's practice through a link on this website, and they started by conducting allergy testing (the skin prick kind) to identify food sensitivities. Ours were dairy (which we knew -- if your child drinks a lot milk and eats a lot of cheese, that would be something I'd look at very carefully) and chocolate (which carob has substituted quite nicely).

 

We also stay away from all artificials and preservatives. Not easy, but (almost) second nature by now.

 

In addition, after some trial and error, we supplement daily with magnesium (Natural Calm) and a potent multivitamin (Kirkman's Specrtum Complete powder). This keeps tics at a mostly benign level for our son. I dabble with a couple of other things, including Vit D3, and keep my eyes open to other things, but the top two are the mg and the multi. I would recommend that you consult with your child's pediatrician about these two items (they are harmless in most cases) and start them as you think about how to check food sensitivities and as you consider the important things Chemar mentions in her post.

 

Good luck,

 

Chris

[ladyd]

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.

[Rennie]

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.

 

are you sure it's not the emotive support he receives DURING eating? what actions occur during eating? my lil daughter loves constant attention, playful types, when eating, otherwise getting her to eat a whol meal is nearly impossible....

Edited January 27, 2011 by Rennie