bigmighty

While you are figuring this out, try ibuprofen 3x daily for a couple of days and see if there is any difference. If yes, it may be brain inflammation. See if one of your current docs is open to a steroid taper in addition to extending antibiotics.

I have shared this article with a few people http://thewalrus.ca/a-feverish-debate/

Okay, can I just say "eek!" that someone would take the focus off of the bar mitzvah. How inappropriate. I'd have been inclined to have responded with "Wow, I had no idea your wife had an expertise in exposure and response prevention. It's very rare that social workers have that specialized training. My son is not available today, but assuming that your wife really has all of the necessary prerequisites, I'm sure he'd be happy to interview her as a possible specialist."
 
But, of course, in the middle of a busy day of celebrating, I probably would just have been left speechless.....
 
So sorry you had to endure that.

Hi LauraMary. Hope things keep heading back in the right direction. DS is nearly back to normal about 10 days out from the one-day reduced dose.

Thanks, Nancy. I guess I really thought that the inflammation would have gone by now. So it surprised us how fast things returned. Going back to the 500 until school is out. Then thinking of switching to 500 in the daytime and 250 at bedtime to see what happens. Also thinking of talking to the doc about another steroid taper to see if we can get rid of the inflammation once and for all. We'll see what she says. Hoping not to go backwards at this point.

A year ago today DS (14) had the light-switch turn back off. Went from five hours per day of ritualized cleaning to zero. Stopped exactly the way it started - entirely and all at once. We got our son back, and he's such a delightful person. I pray that the worst is behind us and that every child gets such a reset.
 
 

A year ago today DS (14) had the light-switch turn back off. Went from five hours per day of ritualized cleaning to zero. Stopped exactly the way it started - entirely and all at once. We got our son back, and he's such a delightful person. I pray that the worst is behind us and that every child gets such a reset.
 
 

A year ago today DS (14) had the light-switch turn back off. Went from five hours per day of ritualized cleaning to zero. Stopped exactly the way it started - entirely and all at once. We got our son back, and he's such a delightful person. I pray that the worst is behind us and that every child gets such a reset.
 
 

DS's 1st IVIG resulted in about 10% of areas improving, but about 10% of new behaviors and worsening in different areas - so sort of a wash, overall. After the 2nd IVIG, I'd say he was at 85% improved within about three weeks. Yes, sometimes the 2nd has more benefit.