Prom

[tpotter]

I think you will be. My son was in the same place as your son at 15. What other treatments is she getting?

[SurfMom]

T, she is on a slow taper of prednisone, a monthly 1gm/kg of IVIG, Sertraline for affect concerns (irritable and unhappy which is 180 degrees from norma) and a prophylactic dose of azythromycin. We are currently considering Cellcept as her ASO continues to climb, now at over 600.

 

She tests negative for absolutely everything but the ASO and Dnase titers.

[tpotter]

Personally, we have found that strengthening the immune system has helped us tremendously. We currently do ART, chiropractics, LLMD. DS is also on lamictal and trileptal, becuase he has seizures, although it is believed that they are related to the PANS. They are non-epileptic, but do respond to the medication (he sees a neurologist for ONLY controlling the seizures, but the neurologist was very impressed that Dr. L. had originally identified what he had as post-infectious encephalitis.)

 

If her ASO is climbing, that would make me suspect that she is being continuously exposed. Has everyone in the house been tested? Dr. B. tested us for strep and mycoP, and I turned out to be the one with the MycoP (I had been symptomatic for years, but no one would bother to test me...even though I later found that my overall IgM was 300% higher than it should have been, and there was no reason that I should have suffered for that long...and am still trying to get rid of it.) But, because I am still fighting mycoP, my DS is still having high IgG's to it, so it is going to be a problem until we can get me well, too. So, I suspect you may be dealing with someone in the family or school or such who is constantly exposing her.

 

BTW...if there is lyme or co-infections, lab tests are notoriously inaccurate. We all tested negative, except DH, but because we were all completely symptomatic (including rages and "stretch marks" rash) we were treated for bartonella, lyme, babesia, and evenutally, DS's labwork came back positive for someo of them.

 

But, overall, I would suggest that you test everyone in the house, AND, you do whatever you can to build up the immune system. Also, test for MTHFR gene mutation, and pyroluria, which may explain why she is having trouble detoxing.