[my ds is nose-diving and we are stuck waiting]

We did not get into the study. I hope you did.

[my ds is nose-diving and we are stuck waiting]

We're also waiting to hear back about NIH eligibility. DD is on riframpin and omnicef and they're doing nadda. Ibuprofen helps. Hang in there.

[New + Questions about where to go from here]

Goodness. A real pandas dr wouldnt say that ...in my opinion.

 

There is also a study at nih going. Looking for pandas kids. If you search the forum it will come up. My son is in it and ut has been great.

 

Frustratingly, it's a verbatim quote from one of the PANDAS docs that has treated many of the children on this board.

[New + Questions about where to go from here]

Thanks all. Yes, she's taking probiotics with the abx. I guess we'll have to find another doctor because our current PANDA doctor said "two courses of Augmentin would be the maximum permissible antibiotic treatment duration" and that if the effects from this round aren't lasting, we will have to consider IVIG.

[New + Questions about where to go from here]

My six year old was diagnosed with PANDAS a month ago by a PANDAS doc. On the list of symptoms, she ticked just about everyone and had elevated tithers -- 607 on the ASO and 597 on the DNASE. She was given 14 days of Augmentin, and we saw a complete remission of her symptoms (OCD, attention, mood etc). It was a total transformation. Then two-days post antibiotic, the symptoms began to return. Now two weeks later, they are as bad as they were before the Augmentin. The doctor has prescribed another 14-day round of Augmentin, but says if symptoms, IVIG is our next step.

 

I know that IVIG will likely help, but I was hoping to try a longer course of abx before pulling out the big guns (which won't be covered by insurance). I'm not sure I understand the two weeks on abx, two weeks off, two weeks on, IVIG approach. Can anyone weigh in?

 

Thank you.