anyone ever had positive response to IVIG after steroid burst failed

[lw47]

My daughter is 10 and has PANDAS/PANS. She was treated by a Lyme specialist, though labs weren't completely positive, as I had Lyme undiagnosed when I delivered her. She has also had elevated ASO titers, so we believe she has both. She didn't respond to the steroid burst, however. The Lyme doc feels Lyme is treated, and her OCD issues are strep related at this point, so we are with a PANDAS specialist. Anyone ever had IVIG work even thought their child didn't respond to steroid burst??? Doc says it's 50-50 at best that it will work.

[Chemar]

Hi

I am bumping your first post up so others can see and respond.

[jan251]

I am interested in hearing answers to this question as well.

 

Were lyme co-infections treated?

 

FWIW, our lyme doc diagnosed co-infections clinically as the tests may not be particularly accurate. I don't doubt that they are present, as certain treatments bring out the co-infection symptoms more. It would not surprise me if these co-infections were causing and/or contributing to the OCD, but we have yet to see any relief, which has me second-guessing everything.

 

With elevated strep titers and OCD, I'd probably continue antibiotics for strep in the meantime, but I might suspect that there's more going on, particularly with lyme co-infections and/or a wonky immune system. And unfortunately, I have no advice, as we are just as lost (also no response to steroids here)

[lw47]

She was treated for bartonella and Babesia also. She has been seeing the Lyme specialist for almost 3 years. I think at this point, it's the autoimmune problem, and she's not moving on the antibiotics any more. Of course, she is still on them for strep prevention at this point. I am hoping she will respond to IVIG this time. Other infections have been checked for too, and those labs are negative.