Here's what it comes down to...would love a poll from everyone&#39

[eljomom]

So my post about if it's inflammation or infection spurred some great discussion. I woke up this morning, early, kicking myself for NOT taking my dd7 in for a swap last month with the sore throat, rash by her mouth (thinking she couldn't really have gotten strep...that's why she's on zithro, right...to prevent it??)...but now really believe it might have been. Will never know....anyhow, I digress....but that led me to another totally different thought....

 

I would LOVE, LOVE, LOVE to hear the answer to this from everyone's pandas "expert", from Sue Swedo, Dr. Cunningham, Dr. Leckman, etc....

 

So this really sums it up:

 

Why, in the absence of infection or exposure, do some kids have distinct "episodes", where there is a clear exacerbation, and then they go back to baseline, and why do other kids end up "chronic" with symptoms?

 

My thoughts, but still don't know what they mean in terms of treatment implications, are: Some stay the former, some start the former and then become the latter, and I suppose some start and stay the latter. It appears, then, that some (the former) stop circulating the auto-antibodies when infection/exposure clears, while the chronic kids keep making and circulating the auto-antibodies. Or, they are ALL always making them against the brain, but only kids with damaged BBB's are chronic?

 

I am going to e-mail my pandas doc (and am certain I will not get a reply), but if anyone else wants to ask their pandas docs, I would love to hear the explanations....and implications of treatments. (ie., abx for the former, immune modulating for latter?)

Thanks for bearing with my mindless chatter....off to teach science co-op....physics today

[Kayanne]

So my post about if it's inflammation or infection spurred some great discussion. I woke up this morning, early, kicking myself for NOT taking my dd7 in for a swap last month with the sore throat, rash by her mouth (thinking she couldn't really have gotten strep...that's why she's on zithro, right...to prevent it??)...but now really believe it might have been. Will never know....anyhow, I digress....but that led me to another totally different thought....

 

I just wanted to let you know that there are some strains of strep that are resistant to macrolides (zithro falls into this class)

 

Did your daughter's symptoms increase last month?

[eljomom]

Well, funny, kind of going along with another post I saw earlier, when she had the sore throat, she was actually sweeter and easier than she's been in a long time. I waited for the $%#@ to hit the fan, but WHILE she had a the sore throat, nothing. I will have to check my very scattered notes, but pretty sure she got a little worse, then a little better, then a little worse again last week. Very weird. I wonder if I should run titers now, but then again, they don't really tell us much about NOW....all it would do, if elevated (which we haven't had) would be to make me kick myself for not taking her in, and I'm pretty black-and-blue from that already

 

 

So my post about if it's inflammation or infection spurred some great discussion. I woke up this morning, early, kicking myself for NOT taking my dd7 in for a swap last month with the sore throat, rash by her mouth (thinking she couldn't really have gotten strep...that's why she's on zithro, right...to prevent it??)...but now really believe it might have been. Will never know....anyhow, I digress....but that led me to another totally different thought....

 

I just wanted to let you know that there are some strains of strep that are resistant to macrolides (zithro falls into this class)

 

Did your daughter's symptoms increase last month?

[Kayanne]

Well, funny, kind of going along with another post I saw earlier, when she had the sore throat, she was actually sweeter and easier than she's been in a long time. I waited for the $%#@ to hit the fan, but WHILE she had a the sore throat, nothing. I will have to check my very scattered notes, but pretty sure she got a little worse, then a little better, then a little worse again last week. Very weird. I wonder if I should run titers now, but then again, they don't really tell us much about NOW....all it would do, if elevated (which we haven't had) would be to make me kick myself for not taking her in, and I'm pretty black-and-blue from that already

 

Don't beat yourself up, you're a great mom who is just trying your best.

 

I think I read on the TS board, that it is common for symptoms to be better while having a fever or something...or I may be confusing that with autism.

 

I guess it wouldn't hurt for you to ask on the TS board.

 

Good Luck