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do tics ever suddenly get nonstop in tS?


eljomom

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I have been on the pandas forum (for way too long) about my dd7, who has had some ocd-ish stuff for about 3 years. Same with clothing issues (not "feeling" right, etc...). I assumed it was quirky stuff that would pass. Spring of '10, started rubbing hair, scrunching nose, smelling fingers. Figured it was transient tics. a few months later, in June, she had a high fever for a day, and within a week, the tics increased to over a dozen, head to toe, separation anxiety was bad, just a different child. And here we still are, over a year later. Still ticcing every day. Usually an assortment of tics, and when she is focusing, much less, but watching TV is horrific. The germ ocd is gone, but now tapps things she touches, evens up, etc. IN fact, I have 4 kids, and they all do that to some degree. I guess I understand the evening up...needing things to feel even. My brother has Tourette's and ocd (and had chronic strep and ear infections as a kid), but my father in law had severe rheumatic fever as a kid. Not sure what genetics my husband and i have passed on....TS or Pandas.

 

We have tried Augmentin for a month last November. Almost seemed to make her worse. Pandas doc tried zithromax at a VERY LOW DOSE and we had her on that for 8 months while we did the wild goose chase from the pandas doc...Ifnectious Disease, ENT, etc. She now wants her tonsils pulled, even with no documented strep. ENT says her tonsils are small, but he takes out at least one set of tonsils a week from this pandas doc. I have heard from parents whose kids got worse after tonsillectomy, so very afraid of that. Her immune panels are normal. No strep titers. I didn't take her to the doctor for sick visits for well over 2 years (which interestingly is when the ocd started) b/c I was so sick of all the antibiotics! She was frequently ill with URI's, ear infections, pneumonia 4 times, from 3 months of age. who knows if she had strep during the sick-visit hiatus.

 

I have been too afraid to try the normal pandas treatments. My daughter seems fairly happy, so we don't want to make things worse. Steroids was suggested last December and we didn't do it. Have heard of kids doing worse right away, and some get better very briefly then worse, while some do get better. IVIG and PEX also scare me, but also have not been offered by our particular doctor b/c dd7 appears happy.

 

I know I've digressed, here, but about 5 weeks ago, her eyeblinking got more forceful and frequent. I had no idea what to do. My husband told me to get a throat culture. I told him there's no way....no fever, no sore throat, headache, stomach-ache. Well, rapid was positive. She was switched to Keflex. Within 4-5 days, tics were back to the normal all through the day unless focusing. Bending then straightening arms, flicking/stiffening fingers, head nod and sway side-to-side, nose scrunch, wide eyes, tapping, mouth stretch/tongue thrust, etc. But she added hopping and is smelling things again. But again, not "nonstop" unless watching TV, but always some sort of movement going on.

 

Well, about a week ago, she woke up (usually every morning she comes in to see me, and i can almost convince myself she is cured, because her tics are very low first thing when she gets up)....so she came in and I noticed she was blinking alot. And since that morning, the blinking is NONSTOP!!! Every SINGLE blink is an exaggerated blinking tic. All day....every second almost. And I am freaking out. Took her in for a strep test...negative. Plus, she's still on keflex. She injured herself almost 2 weeks ago...big skin avulsion that they couldn't stitch, and it's still very gooey ( not infected), nasty, healing ,etc....

 

Is this something that happens in TS? Overnight severity/frequency increase? Just don't know what to do anymore. You know, when you have a headache, it is a symptom. It could be from a brain tumor, caffeine withdrawal, head injury, stress, aneurism, strep. But you wouldn't treat the headache, the symptom, the same way. Same with tics. Some are from tourette's, some from pandas, some apparently from food allergy, lyme, yeast????? If I hadn't gotten the test by Madeline Cunningham run (which apparently she is going to become a public lab soon) which showed my dd in the high pandas range, with 2 antineuronal antibodies very, very high, I might just say it's Tourette's. I've also had 2 neurologists say it's pandas (or pitand). There are so many rabbit trails to take.......food sensitivity, yeast, lyme, gut stuff, ivig, pex, steroids.....TS in some way is almost simpler, if that makes sense? Actually, even if it was "just TS" I would still be wondering about the rabbit trails. But with pandas, it seems like the treatments are much riskier....steroids, ivig (=blood product), PEX (central line). Those things, according to some specialists, are reserved for "severe cases." So what makes a severe case of pandas, TS, etc. My dd is ticcing almost once a second, but is not complaining about it. Blinking is not her only tic.

 

Well, i am all over the map here. Just feeling so helpless, so damned if I do, damned if I don't.....

 

Thanks for any input.

Wendy

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I am wondering if the anti-neuronal antibodies may be giving a hint of the bigger picture more than we think. Both my sons tested in PANDAS range for Cam K...one high end...one, low end. But, they both had normal anti-neuronal antibodies. They are both doing really well and responded well to standard PANDAS treatments. (antibiotics and steroids (5 day bursts) I wonder if the kids with higher end ana's have a harder time recovering? Don't know....just a thought. Perhaps others will chime in. I would be curious to know, for those that had the Cunningham test done.....what their ANA numbers were, and how they are doing/responding to treatment.

 

 

 

yes, me again...Eljomom! :ph34r: Leaving you be now.....

Edited by P.Mom
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it must be frustrating to have soo many issues at once and not knowing the exact cause.

 

you may want to try NAET for tics & OCD. it has helped my kids tremendously and it is noninvasive. NAET works well for tics if it is allergy induced. As for OCD, NAET can also treat emotions.

 

i think it is worth a try.

 

good luck!

 

Pat

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Haha---you found me P.Mom :P I think you ask a really, really good question. I wonder if Cunningham is keeping any kind of data on that. I, too, thought the same thing one time. That high Cam K meant more of an active infection causing inflammation, which abx would help, while antineuronals implied more of the autoimmune havoc, thus needing more of things like PEX?

 

 

I am wondering if the anti-neuronal antibodies may be giving a hint of the bigger picture more than we think. Both my sons tested in PANDAS range for Cam K...one high end...one, low end. But, they both had normal anti-neuronal antibodies. They are both doing really well and responded well to standard PANDAS treatments. (antibiotics and steroids (5 day bursts) I wonder if the kids with higher end ana's have a harder time recovering? Don't know....just a thought. Perhaps others will chime in. I would be curious to know, for those that had the Cunningham test done.....what their ANA numbers were, and how they are doing/responding to treatment.

 

 

 

yes, me again...Eljomom! :ph34r: Leaving you be now.....

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Not sure what NAET is, and not sure it's an allergy induced type of situation. Hmmm......

 

it must be frustrating to have soo many issues at once and not knowing the exact cause.

 

you may want to try NAET for tics & OCD. it has helped my kids tremendously and it is noninvasive. NAET works well for tics if it is allergy induced. As for OCD, NAET can also treat emotions.

 

i think it is worth a try.

 

good luck!

 

Pat

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If you google NAET, you will find the official web site. They have a search feature to help find practitioners, and under each practitioner they list they courses they have taken. I have not tried this yet for my ds, but am considering it, and for my non-PANDAS ds too, who has severe allergies, and other things going on. I have had some NAET sessions, but don't want to try to explain it b/c I will botch it I'm sure! I think it helps to have an expanded thinking about what allergies can mean in order to understand it better. They can go way beyond the things we tend to think about.

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