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Do most of the Pandas kids here have tics?


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My son gets tics only during bad exacerbations. We've seen neck ticks, throat clearing tics, and eye blinking. Some things border between tics and compulsions, like a need to tap things with the back of his hand (two times) and once a need to take three steps then bend forward - for about 4 hours straight, or one where he twisted his neck while he held his breath. In hindsight, some of that could have been chorea.

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I'm curious. My daughter does not have tics all though for the first couple weeks she did seem to have one whenever we went somewhere. That was grimancing and turning her head to the left. Was not constant though, and her therapist at the clinic think that her repeating herself constantly could be a possible tic. She said that sometimes there is a fine line between OCD and tics. Most of the tics I've read about are much different. Truthfully, I don't know if she has PANDAS but I need to fully investigate the possiblity as a parent who is so tired of watching her suffer.

 

We did do the blood strep test and her titers we 264 after 7weeks of the onset of server OCD. I'm waiting for the psychiatrist to sign this other paper to get a secondary insurance to help cover the medical costs of her ocd clinic, perscriptions etc.

 

Anyway, I just read SAVING SAMMY. Gives me hope for so many people, and made me wonder about the tics.

 

 

No tics. But, my daugther is on the Spectrum and stims. She's a hand-flapper and a hopper.

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Our son was originally diagnosed with Sydenham's chorea due to seizure-like episodes of choreiform movements that eventually evolved into tics. For a long time they were just motor tics, then vocal tics emerged. His later exacerbations, though, were characterized by more debilitating non-tic symptoms: OCD, anorexia, rages, cognitive fog, urinary frequency, etc. The tics were the main symptom in the beginning but became secondary to OCD over time.

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No motor tics here, but he does have vocal tics daily at school, and I've heard them twice at home when he's really wound up. The vocal tics started last year and we've been dealing with severe anxiety, OCD, mood lability, etc for 4 years.

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No major tics here, either.

Dd(8)In an exacerbation we had major separation anxiety, paranoia, ocd, depression, dilated pupils, rage, mood lability, and a major handwriting deterioration.

Once examined by Dr L she pointed out some chorea I had never noticed ( in her toes) and a lot of hypotonia ( which I notice all the time now!)

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Many tics. Very socially stigmatizing. 300-500 a day. Facial grimacing, Mouth movements, tongue, arm, full body coordinated with mouth and arms and head. Chorea looking.

They pyramid on top of eachother, will ramp up over days and weeks one at a time until they all happen coordinated together. When he has a series of the full body ones in a row looks like seizure. scary.

 

We have gotten rid of them for almost a year and a half...

first with monthly bicillin shots April 08- July 08. (my son has autism and gets very yeasty with ABX so this was a way to bypass the gut)

then he became resistant to the antibiotics-they stopped working.

6 more months of tics waxing and waning (Aug 08- Jan09) during which we tried oral antibiotics zithro (no go) prednisone burst (made him very aggressive and did not notice difference).

 

February 09 started monthly IVIG. !g/1kg

Completely got rid of tics for a year and a half, mainstreamed at school 1-2 hours a day, getting invited to bday parties, played a piano recital, Went to Disney, best year of his life!

June 2010 reexposure to strep or mono

 

Tics back- Worse than ever up to 1200 a day at school. lo dose no longer working.

Dr recommended hi dose IVIG now. October 2010 first hi dose. Been bumpy. Tics are down but not gone. Seeing other behaviors. Praying it works.

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Original major manifestation was tics. Aren't so bad anymore, but are still here. Forgive my ignorance here, but I thought that all P.A.N.D.A.S. kids did it to some degree? & can someone explain the difference between tics & stims, please?

Anyone? Please?

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