melanie Posted January 8, 2015 Report Share Posted January 8, 2015 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??? melanie Link to comment Share on other sites More sharing options...
Rachel Posted January 8, 2015 Report Share Posted January 8, 2015 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? Link to comment Share on other sites More sharing options...
ktdommer Posted January 8, 2015 Report Share Posted January 8, 2015 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. K Link to comment Share on other sites More sharing options...
dasu Posted January 14, 2015 Report Share Posted January 14, 2015 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? Link to comment Share on other sites More sharing options...
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