rifampin

[peglem]

So, 1 week out from finishing the rifampin (actually last friday was 1 week out) PANDAS symptoms amped up really bad all weekend. She's still on full dose augmentin. I'm physically and emotionally exhausted. Going back to doc today.

[peglem]

So, the doctor said that the fact that she responded well to the rifampin is a good indication that we are indeed dealing with intracellular strep, but he feels the rifampin is too dangerous for her liver (given that she's on other meds that are cleared through the liver also). But is willing to give zithromax, starting with 500mg/day for 3 days to build up tissue levels, then maintain w/ 500mg every other day. While we do this, we'll continue the full strength augmentin for another 7 days. Basically, he thinks until we do some immune system treatments, we will not be able to eradicate strep. So he's treating symptoms until we see Dr. L in January. He's going to call her tomorrow so he can find out what blood testing she wants done, so it can be gotten prior to the appointment and see if we can get treatment that same week or soon after our appointment, so we will not have to make a second trip for that.

[fuelforall]

So, the doctor said that the fact that she responded well to the rifampin is a good indication that we are indeed dealing with intracellular strep, but he feels the rifampin is too dangerous for her liver (given that she's on other meds that are cleared through the liver also). But is willing to give zithromax, starting with 500mg/day for 3 days to build up tissue levels, then maintain w/ 500mg every other day. While we do this, we'll continue the full strength augmentin for another 7 days. Basically, he thinks until we do some immune system treatments, we will not be able to eradicate strep. So he's treating symptoms until we see Dr. L in January. He's going to call her tomorrow so he can find out what blood testing she wants done, so it can be gotten prior to the appointment and see if we can get treatment that same week or soon after our appointment, so we will not have to make a second trip for that.

 

 

Peglem,

I re=read this and this one statement stood out.

 

Basically, he thinks until we do some immune system treatments, we will not be able to eradicate strep.

 

SO this means IVIG treatments, I reckon. I plan to try and get them in January. My son has immune deficiencies, as I've noted. My doctor does not want to take any action until we get a few IVIG's under our belt. I am pushing for different abx however-Keflex, etc.

 

I read an article in a British paper about a girl of 13 with dementia. Started at 9. The article says her immune system is weak. We gotta act soon, that's all I can say, because the girl's symptoms are too similar to my son's. Scary stuff.

 

 

I also wonder about T and A now and whether to hold off or not. His tonsils are small. Everyone knows about the anecdotal evidence on T and A- I just wonder how much is in those tonsils, which I believe are supposed to FIGHT off strep.

[fuelforall]

Just got the one week Keflex 500 mg a day.

Hope it's a merry Xmas.

 

Michael