PANDAS? tourettes may be strep!

[sf_mom]

Kim: Buster's and EAMom's daughter CaM Kinase went from 253 during an episode, to 183 non episode, to 119 7 weeks post IVIG, Mom MD Son's CaM Kinase went from 201 to 98 four months post PEX and another child went from 170s to 106 one year post IVIG..... We will retest our son once he is a year post IVIG.

[MSmom]

I am reading this board like crazy, and appreciate the info so much. Caryn and Wendy's conversation intrigues me, because, like Caryn, my daughter has severe allergies, gluten intolerance, etc, and we had had her health so greatly improved from all of the efforts of her DAN doctor(extreme diet changes, supplementation, etc. He also wants her to take allergy shots.) My daughter's DAN doc agrees she has PANDAS, but chooses to fix the gut and immune system and does not prescribe antibiotics for it. I agree with his treatment and I know he is correct in what he is saying, but my daughter is 16 and needs to feel better NOW so that she can salvage a bit of her teenage years. So we are going to see Dr. K, and hopefully get her on antibiotics (in addition to all of the immune repair that her DAN doc is doing.) I know for certain hers is PANDAS, because of the dramatic onset following her last strep infection. Pretty much a textbook PANDAS presentation. She has had bouts of this several times over the last 5 years, as well as rheumatic fever type illness 3 times. Her immune system is a total mess, and she has many allergies and some weird antibodies that are elevated. She had a severe allergic reaction the last time she took an antibiotic, though, so I am worried. While I know that fixing her gut and allergies, and therefore her immune system, are the best long term fix, we are still going to look into the antibiotics.

My son, who does not have elevated ASO or Anti-Dnase B titres has had several bouts of almost an identical illness, so I am thinking he most likely has some PANDAS as well. He has not had the rheumatic fever like illness as severe as my daughter has however.

I guess the point I am making is that, since I want my daughter to have some kind of life while we are fixing her immune system, we are going to do the antibiotics also.

Pam