Is it back?

[marylandmom]

DD 8 diagnosed with PANDAS in Sept/Oct after major exacerbation last summer.

We were on a good path for a while but caught strep again in the beginning of November. 10 days of Omnicef seemed to clear things (strep-wise) but PANDAS symptioms have waxed and waned over the past few weeks.

 

Today--THE RAGE!!!! Oh my. Pretty bad. She seems to have a clear running nose and I did do a rapid test--negative-here at home.

 

Have a lot of you seen these rages come with viruses/colds? How long do you think your kids PANDAS exacerbations last? I have been charting her and we seem to have about 5-7 normal days and then a few BAD ones.....

[Joan Pandas Mom]

I'm sorry to say, it sounds like it might be back. My son had had untreated PANDAS for 5 years, very long story. We started treating PANDAS last Oct. with last huge exacerbation. I have recently been told by a PANDAS expert that had he been on abx long term then, when all of this started, this would be a different story today. If I had it to do over again, I would have found a PANDAS doc then, done long term abx, possibly PEX then definately IVIG. I was afraid 6 years ago when a neurologist mentioned possibly PEX or IVIG for severe cases of PANDAS. How I wish I had done those then. I hope this helps and good luck with everything.

[dabel]

Yes virus' etc cause exacerbation in this house. I hope I don't scare you but you asked. ) The exacerbation periods can be well over a year around here.

[dcmom]

We see episodes triggered by some viruses and colds, but not always. The one thing I noted in your post that is very unlike our experience are good and bad days. We have good times, and then with a minor blip or full blown episode, things go bad and stay there consistently until healing begins.