First flare after initial episode...

[_Misty_]

My dd7 has PANDAS/PITAND (can't pin down the trigger). Her initial episode was May 2012. Amoxicillin kicked its butt and over a few months she returned to essentially 100%. We also added inositol, fish oil, magnesium and probiotics, but the antibiotic really seems to be what helped. Her first big flare is going on now and has been for about a week and a half. We've had little bumps here and there, but this is the first time it's hanging on. I don't really know what to expect. I know it's different for every child, but what is common for a flare? Her first episode was really intense for a few weeks. This time she is still able to function, but it is certainly lowering her quality of life. She has times during the day (mainly mornings) when she is great, then evenings are much worse. (I have another thread about MTHF supplements, which I suspect may have brought this on, but if not, I'm looking for info on flares). Are secondary episodes usually milder and shorter, or not? Thanks for any help! I had really put this in the back of my mind because she was doing so, so well.

[nicklemama]

The better in the morning/worse at nite is common. My DS is the same during a flare. He's never been as bad as pre diagnosis but it wasn't easy either. We treat flares with treatment dose abx and motrin. This usually calms things down.

[airial95]

We also have experienced the pattern based on time of day. We've found that when my son (5 yo) is in a flare, he has a harder time as he gets tired. So we may see worse symptoms at night after a long day, or even mid-day when a nap might be needed. I think it's the addition of being tired (which makes any kid cranky)that makes it harder for him to "control" his issues. We have continued to insist on naps - and they do have rest time at his preschool still. On the weekends, he may fight us, but we make him at least go in his room for "quiet play", no less than an hour - when he's flaring - he almost ALWAYS falls asleep - sometimes as long as 3 hours, which actually helps the evening time go better. We've also found that he sometimes falls asleep after school in the car with his babysitter when picking up his sister for school or driving the babysitter's sister to work.

 

My PANDAS daughter (6 yo) outgrew naps a while ago, but we've always instituted "quiet time" for her as well - we've also found that when she flares, she also tends to fall asleep for about an hour which has always helped.

 

I know it sounds silly, and overly simple. But it has been a really noticible pattern for us. Even when he doesn't sleep, the "quiet time" helps him decompress.

Edited January 31, 2013 by airial95

[_Misty_]

I can't get her to take a nap anymore even when she needs it. She's had 2 or 3 nights with insomnia and she still won't take a nap. I'm so thankful it's not as horrible as last time, but I'm really curious how long this will last.

 

I had forgotten about motrin! Started that today.