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Need info on PANDAS/ my son may have..


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Sorry..we live outside of San Fransisco (Concord)

Kaiser is my HMO and I had to look through their website to try and find a Dr who might know about PANDAS

I am dealing with a Pedi who specializes in infectious diseases and he doesn't really understand PANDAS (I thought he did)

I then found a rhumatologist pedi in Sacramento (both auto-immune) and I haven't heard from him.

I feel like all these Dr try to pass the buck..they don't know what to do with our kids..Sarah

IVIG is only approved insurance wise for immune definciency not over active like our kids..how messed up is that??

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Isn't PANDAS immune related? That doesn't make sense. I wonder if you could file an insurance claims appeal. Boy you would think an ID Dr. would be up to date on this! How frustrating. Also I heard child rhumatologists can help and treat the PANDAS with pulse corticosteroids or IVIG? Probably depends who you go to and their background with PANDAS. I hope you found the right Dr. now and are going to get the treatment you need.

 

Michele

Sorry..we live outside of San Fransisco (Concord)

Kaiser is my HMO and I had to look through their website to try and find a Dr who might know about PANDAS

I am dealing with a Pedi who specializes in infectious diseases and he doesn't really understand PANDAS (I thought he did)

I then found a rhumatologist pedi in Sacramento (both auto-immune) and I haven't heard from him.

I feel like all these Dr try to pass the buck..they don't know what to do with our kids..Sarah

IVIG is only approved insurance wise for immune definciency not over active like our kids..how messed up is that??

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Michelle, unfortunately mainstream Dr are pretty clueless on PANDAS...

I even contact rhumatologist pedi at Kaiser and he never got back to me..

I would like to know if anyone has treid LDN for immune dysfunction????

Sarah

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I have heard of plasma transfussions, IVIG, pulsecorticosteroids, but not LDN for PANDAS. Let me know if you find something on it being used.

 

Michele

Michelle, unfortunately mainstream Dr are pretty clueless on PANDAS...

I even contact rhumatologist pedi at Kaiser and he never got back to me..

I would like to know if anyone has treid LDN for immune dysfunction????

Sarah

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I am open to any suggestions!! My son is a MESS! He's very agitated, tons of OCD....he is a completely different child than he was a year ago!! We got back a french porphrins (sp?) test that shows HUGE immune issues with my son...Sarah

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