At what point do the flares stop?

[Agnes26]

DD7 is about 8 months into recovery. We know onset of PANDAS was triggered by strep. She had IVIG last June and has been, and currently still is, on Augmentin ES for six consecutive months. She did ERP therapy at FSU in October. She is, thankfully, doing really well. Except. And it's a big one. She seems to have super intense short-term flares when she around someone who is a carrier. She will suddenly become emotionally labile, crying, angry. She writhes on the floor. She'll wander the room aimlessly. She doesn't make a whole heckuva lot of sense. It's as if someone flips a switch. When we remove her from the situation, she's fine --or at least on her way to appearing fine -- after about 45 minutes. She returns to us.

 

I'm fairly certain that it's just strep triggering these flares because she's had colds, I've had colds and she doesn't seem affected by them. The only time she has had an uptick in PANDAS symptoms was for two days with the flu -- and then it wasn't the symptoms described above. Instead, there was a bit of checking OCD, that thankfully abated after ibuprofen. The other thing that leads me to believe that it's exposure to a strep carrier is that it always happens at one after school activity where she's with a group of kids that she doesn't interact with on a daily basis. I thought, well, maybe it's because she's tired and hungry at the end of the school day, but then we went on a field trip with this group first thing on a Saturday morning and whammo. Same possessed-like behavior. Once we left the field trip, she got progressively calmer and more clear until we hit that magic 45-minute mark and she was fine.

 

Our doctor said that it's not unheard of for kids to flare for 24 hours. Anyone else have a child who has short flares like this? At what point in the recovery do flares stop?

 

I'd appreciate any insights you all might have.

[nicklemama]

Wish I could give you better news but it may be a long time before the flares stop. We are three years and two ivigs into this and still we get flares. There may be some kids who stop having flares soon after treatment but I'd guess they are in the minority and may be kids who had treatment fairly quickly after initial onset. DS is not in that category.