peglem

My daughter has both, but I think it was the PANDAS that caused the autism characteristics. How do you tell the difference, especially in a baby, between stims and tics and/or compulsions or obsessions?

My 2 cents: The 1/2 life of an antibody is roughly 3 weeks. If your child is having an autoimmune reaction-something is provoking the generation of more auto-antibodies, and that could very well be a slow growing infection (mycoP?).

I'd try increasing the zith to 500mg/day for a week or so, then 500mg every other day. So glad you are getting in to see Dr. L she is wonderful.

after thinking about I haven't given her any ibuprofen in 5 days! OMG could that be causing this? or making it worse? Or maybe you haven't given the ibuprofen because she hasn't needed it?

!!!!!!!!!!!!!!!!!!!

My own thoughts on this is that post strep behavioral/physical symptoms are not that uncommon, but usually mild enough that its just attributed to not feeling well. Of course a sick child wants mommy more, of course a sick child is more irritable...etc. I think its the intensity and chronicity (did I just make a new word?) of symptoms that sets PANDAS apart. But, also, I think your SIL is really on the ball to have made that observation.

OMG! I would be so freaked out! Good to hear that the school psych is on it. Pray that the repercussions for your son are minimal!

Maybe its too soon to tell- but I started the rifampin yesterday, and this morning, for the first time in 2 weeks she got on the bus to go to school. She's been refusing and then I have to drive her to school instead. This is exciting! She didn't hit anybody this morning, either!

Aspergers is "diagnosed" based on a set of symptoms. My opinion is that you should look for the underlying cause. If biaxin gives improvement in symptoms- chances are good that there's an infectious agent at work!

Augmentin will not treat any infection she might have. Its strictly extra-cellular and will not work for intracellular organisms or those that form cysts. Personally, I would not give any more vax's until after a thorough check of the immune system. Vax's tend to contain ingredients that provoke an immune response- you don't want to do that until you're sure its safe to do so. I've not had my child checked for lyme- will let others answer your concerns with that.

Oh so happy for you and your daughter! Please keep us posted on her progress. On another tangent and I don't even know why this thought came into my mind right now... how is the kitchen reno going? You didn't unearth any mold by any chance, right? I've just been running into that word a lot lately it seems, and it can cause all sorts of trouble. Anyway, good to hear your daughter will get the treatment she needs! Its going well- but we're still living in our living room. Cabinets are in, countertops being installed right now. No mold! Ceiling had to be redone (old drop ceiling) and we move a wall- this is major and taking a long time. It will be beautiful, though. Allie does not seem at all interested in the changes. I wonder, though, if retreating into lid obsession, is her way of avoiding dealing with the change.

Wow, isn't it strange how an rx for abx can make us so happy? I think it varies from a day to a couple of weeks. Hope you see improvement soon! I'd start them right away. Bacterial probiotics should be given at least 2 hours after abx, so the abx doesn't kill it. If you use s. boulardii, you can give it at the same time as the abx-its a good yeast. I don't have any response to your other questions, but I'm sure somebody will.

The immunologist has really come around as well. 3 years ago, he was not very cooperative and not terribly interested. He's come a long way, baby!

So, got a call from her ped. Her immunologist (the one who orders her IVIG) agreed that behavior can be used as an indicator of treatment success, and has agreed to sign off on the rifampin treatment. WOOOHOOOO!!! I told her ped that I sure hope he doesn't get any grief over this and he replied that at the end of the day the only one he really has to answer to is God. I pray that he will be blessed for doing the right thing and that he'll not suffer any repercussions for it.

I would keep her on treatment dose at least until all symptoms have resolved.

First of all...WOOOOHOOOOO! Enjoy it when you got it! Can you attribute the change to anything new you are doing treatment-wise? This does happen for us sometimes- and I always try to figure out why so we can perpetuate it. In our case, it has never been permanent. Hope the good times last for you!

Nice job! Congrats!

What is this drug they're talking about for treating SC?

That's a good idea. It might help her pediatrician keep in the good graces of his partners. I feel bad that he has to go through this crap to help my daughter.

Thank you, Mary. I do want to clarify that my daughter is on treatment dose zith- its just the rifampin that has suddenly created all this "interest" from otherwise disinterested parties. My daughter has seen most of the doctors in the practice in the past. Not a one has done anything to help her. Its vexing that they put such energy into making sure her doc doesn't help her, and so little energy into improving her condition. But, w/o her doc, I have no help at all medically.

My understanding is that lyme testing is IgG based. W/ IVIG every 28 days- we cannot get an accurate result. Am I off base w/ this? I'll see what her doc has for us tomorrow- we may be getting the rifampin afterall.

Yeah, I'm thinking he should have given you a 30 day supply. I think refills are flagged if you do them less than a month apart.

We saw him Wednesday. Overheard a conversation he had w/ one of his partners (she was not kind!). He came back in the exam room to explain and Allie whammed her head really hard on the wall. So he said (because of the wham) that he is not going to refuse treatment just because of what other people think. He's getting w/ the immunologist and has promised "a protocol" by Monday. He was trying to find evidence of what the rifampin is treating (must be something since she improves so dramatically), but we haven't found anything- IVIG makes checking hard. So, hopefully there'll be something tomorrow, and she's scheduled for IVIG this Thursday.

This past week, Allie has not been sleeping much. I give her the stuff that usually does the trick (melatonin and valerian root) and she falls asleep for about 2 hours, then she's up for the rest of the night. This morning she has a runny nose and a fever. DANG! Not sure how much longer I can keep this up. I even tried the extended release melatonin-no help there. She's got this obsession with lids to travel mugs right now, and I think its happening even in her sleep because as soon as she wakes up, she's at the lids immediately, even though she takes them to bed with her. I can't even think straight right now....

If there is infection during the burst- the burst can actually strengthen the infection because it suppresses the immune response. So you get relief from the autoantibody production during the burst, but comes back stronger after.