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Hi

We went to our old neurologist and within 10 minutes he asked me if I ever heard of PANDAS I stated to cry. I am in the process of getting all of his medicalrecords together to show corralation beteween illness and tics /behavior I think he is going to do the iVIG well I think I hope I dont know many of you know my story cross your fingers and hope for the best I will keep in touch I dont want to jinx anything Melanie

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Hi Melanie...I know your son is older and I wonder if PEX would actually work better for him? I know NancyD's dd did have IVIG in her dd who was a bit older (12). I understand something changes at puberty, which makes these kids less responsive to IVIG?

 

MomMD's son (not older, but severe symptoms) had PEX so maybe she will chime in as well.

 

Is the neurologist going to try a steroid burst first?

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Hi Melanie...I know your son is older and I wonder if PEX would actually work better for him? I know NancyD's dd did have IVIG in her dd who was a bit older (12). I understand something changes at puberty, which makes these kids less responsive to IVIG?

 

MomMD's son (not older, but severe symptoms) had PEX so maybe she will chime in as well.

 

Is the neurologist going to try a steroid burst first?

Whats PEX???

Sarah

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Whats PEX???

Sarah

 

PEX = Plasma exchange / plasmapheresis.

 

I still have to get his medical records Ill know more this week I dnt know his plan He seems set on the IVIG Ill keep intouch

 

Melanie

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