Question re: IVIG and symptoms coming back

[Williams_Mom]

My son, William, had IVIG in the middle of July. His symptoms basically disappeared post IVIG (he did spend a week sleeping and feeling not so great but then was back to his pre-PANDAS self). We were soooo thrilled. We are now about 6 weeks or so post IVIG and his symptoms are coming back. Things are dirty again (his shirt that may have touched the carpet where his brother's underwear might have been...or the food that he was eating that hit his brother's hair <it didn't actually come within 1 foot from his brother>, his spit <this one is hard to deal with!>, that kind of thing....) He started a short course of prednisone today and he asked me at dinner how long it takes to start working. :-(

 

My question is this... those folks that have done IVIG, what has been your experience post IVIG? Have you needed to do more than one IVIG? How soon have the symptoms come back?

 

Thanks for any thoughts/experience you are willing to share!

 

Sally

[LNN]

I may be in the minority, so take my post with a grain of salt...

We did IVIG for my ds 7 in mid-June. We had 8 weeks of h**l. At week 8, the majority of PANDAS symptoms went away and the rest were substantially declining. But two things remained - muscle pain and brain fog. So 3 weeks ago, we did an Igenex lyme test. At the same time, we re-checked my son's C3d levels, since high levels can give you a false negative and I wanted to know how reliable the results might be.

 

Got the results on Thursday and they were overall negative but with several lyme-specific bands "indeterminate" or positive. My son's C3d levels were 52 (6.5 times higher than normal). So my feeling is that it's very possible he has lyme. I asked our doctor about the C3d levels - which were essentially unchanged from pre-IVIG (51). Shouldn't IVIG have made those levels drop? Yes was the answer, unless something is still making him sick.

 

If you had such great response to IVIG and now see back-sliding, I think I'd try to determine what is making him sick - re-exposure? a second co-morbid infection (lyme, myco, EBV, something else?). I'd probably do this before having a second IVIG on the thinking that if there's a second infection, a second IVIG won't give you the full effect you're looking for.

 

It's great that you had such positive IVIG results (I'm jealous). I know it's hard to remember that as you watch the nightmare come back. But it seems that's a big clue. Sounds like you found a treatment that may be very effective - now you just have to find and eradicate the hurdle that's in the way of a longer lasting remission.