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its been a while since ive posted things are ok still having behavioral issues dannys going to be 21 soon and that is a whole new world

Hes on depakote and gabapentin and namenda till doing ivig every21 days

im feeling defeated somedays ,and hopeful others.

Anyone have any cure yet???


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How long have you been doing your treatment? What symptoms are you dealing with? My son has been doing PEX since last August. Seeing small changes. Immune wise, he is staying well. He has not had any infections. Does the Namenda help with pain?

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Has Lyme been ruled out. I don't know your son's story. I have a 19 uyear old with PANS and having adult sick children is plain hard. My son did 6 rounds of IVIg and it seemed to help. Insurance won't allow any more.

Have you read about canabis for treatment? Have you tried any supplements or HBOT?

Hope things get better for your son.


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I'm both sorry to hear about your lack of progress. The cycles of hope and defeat sound like a familiar refrain here. If you can give a summary of the illness and symptoms that would help.


One more question - are you using 21 day IVIG due to immune deficiency? Does that mean deficiency for just strep or a broader array of infections?

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