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Have you ever heard of PANDAS?


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My nephew is in the hospital right now with severe symptoms of sudden onset Tourette's Syndrome. It came on him extremely suddenly about 3 months ago and has progressively gotten worse. It is to the point that he can get no relief at all from the tics unless he is asleep. During every waking moment, he is making these movements. Do any of you have any ideas or suggestions that we might research to help this poor child?

 

TIA,

Maddy

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I would highly suggest strep tests - rapid, long term culture and titer test being run. In fact I'd insist on it. They aren't so horribly invasive and it should be at least ruled out.

 

All of my kids are extremely sensitive to strep - my middle is suspected to have PANDAS. He pulls his hair out and has a huge uptick in OCD like behaviors if I do not catch it soon enough. Once the strep has been eliminated he is back to himself. The past couple of times we've had trace blood in his urine. My oldest has horrible rages with strep. Again, once it's treated he reverts to himself.

 

None of my kids have ever presented typical strep symptoms. As a teenager I developed a complication from untreated strep that paralyzed my neck, shoulders and half my face.

 

I loathe strep.

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My nephew is in the hospital right now with severe symptoms of sudden onset Tourette's Syndrome. It came on him extremely suddenly about 3 months ago and has progressively gotten worse. It is to the point that he can get no relief at all from the tics unless he is asleep. During every waking moment, he is making these movements. Do any of you have any ideas or suggestions that we might research to help this poor child?

 

TIA,

Maddy

 

I am praying! I hope that if the strep test is done they find out that is the case and not something more serious (I hope that comes across right).

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My daughter has Tourette's/Juvenile Epilepsy that can get like that when left untreated. Over the course of a couple weeks, she went from nothing to having tics literally every 2-3 seconds all day long.

 

Her neurologist did EEGs, drew blood, observed her, and on. and on. and on. Testing came back negative for strep and for some reason the EEG couldn't see her seizures, but we decided to try medication anyway.

 

She takes Keppra (seizure med) which completely stopped her issues. We started out with amoxicillin or penicillin (can't remember). She was on that for a couple months with only a small change. She was able to stop the Keppra a few months ago and her tics/seizures have not been bad enough to warrant medication recently.

 

Keppra carries some risks with it (such as aggressive behavior) but for us, it has been a miracle drug.

 

I am happy to talk to you more about this if you send me a PM.

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