peglem

Very encouraging! Thank you for sharing. I hope to be able to report a similar story someday.

Its possible the stuffy nose and cough have more to do with it than medicine you gave him last night.

Its usually only good for 4 hours here- and we give more than that.

Thanks. That means a lot to me.

Well, I don't know. Kinda confusing right now, here. We did a steroid burst recently for things that were not the usual PANDAS symptoms (bad, bad chorea). We didn't think to check for strep 1st because my daughter was on a pretty good dose of zith (and added keflex w/ the steroids). This is the 1st time we have not had a good response to steroids...5 days after the steroids we got a positive strep test. So, my new rule is no steroids w/o negative culture. The strep has not cleared with a course of clindamycin and we had IVIG during the clinda treatment. Sigh. Why did you think the steroids would bring out symptoms? They should reduce inflammation and halt (or slow) antibody production. Shouldn't that help symptoms to resolve? I'm kinda thinking out loud about what the possibilities are.

Are you sure the strep was cleared before starting steroids? My daughter has bed wetting when she's streppy. Wondering if perhaps the steroid caused a strep flare?

My understanding is that heavy metals start building up in the body, the brain, and lastly they build up in the hair, so if you find them in the hair, it's a pretty good indication that you have build up in the body and brain. But don't quote me on that! Back when I followed the autism research a little more, researchers were astounded to find that the autistic kids had much lower hair mercury than controls. But when they did a provocation test, the autistic kids were dumping more mercury in urine than the controls. They thought the possible explanation was that the autistic kids were "poor excreters", and their immune systems are not detoxing properly. I don't like to use hair testing for that reason...hard to interpret what the results really mean.

Wow!! I'm keeping you guys in my prayers ((hugs))! Thanks! Hope she doesn't develop the prayer-resistant strain of GABHS!

Allie finished her clindamycin on Thursday. Took her in for FU strep test. She's positive on the rapid, was put on augmentin, and sample was sent for sensitivity testing. Her chorea is a little better but she's having problems with bladder control. Nighttime wetting has always been an early sign of strep, but she's never had daytime problems like this. Urine sample came up clean for infection.

So, how do you know if it was abilify or PANDAS that was causing the problem? That's the problem I see w/ the psych meds-they give you another highly variable variable, that messes with the same neurotransmitters that are disregulated with PANDAS.

Well, hope you come up with something creative and fun. Personally, I'd LOVE an autism UNawareness day- a day when I can be completely oblivious to it!

Was the age regression gone before the IVIG? Was the IVIG done to address the chest spasm/breathing issues? Glad to hear some things have gotten better, but those breathing issues sound so scary!

We've had 2 MRIs. Both normal. But, I think its worth ruling out structural causes. If I had to bet, I'd say this guy is not going to be supportive of a PANDAS dx, based on the fact that he's already saying how rare it is (trying to talk you and him out of it) and if those titers do not come back elevated he's going to say its not PANDAS. Hope I'm wrong, but that is almost exactly my experience with a local rheumy.

I started to reply earlier, but had trouble expressing it right- but dcmom said it just about right. If your friends can come up with scientific evidence of the danger to your child that you find compelling enough to influence your decision, then that's something. But if they are the ones who think its too dangerous, then I think the burden is on them to provide the evidence. I think what they're perhaps really expressing is that you are putting your child through an unnecessary procedure- not their call. I think many of us have had to deal with this attitude from those outside of the PANDAS realm (including from doctors). Just stick to what you think is best for your child and try to avoid the situation where you are put on the defensive- its unproductive and you already have your plate full dealing with the medical issues.

She may not be consciously hiding it. Sometimes the brain will make up explanations to make obsessions and compulsions seem reasonable.

This is the big problem with all of this...there is such a lack of certainty about what is really causing problems and what treatment is/will be effective. Everything is so "experimental." And we get so many different opinions from doctors as well. I'm at a point here, that I really don't know what to do. My daughter is slowly improving on Clyndamycin, which she finishes tomorrow. Saturday we'll take her for a follow up strep test. But, then what? She gets monthly IVIG, was on zith and keflex and still had a positive strep test. So what do we do? Should we even do abx prophylaxis? It clearly did not prevent a really bad episode. My gut says there is something more than strep here- but what? And if its viral, then what? My problem with lyme has always been that the (expensive) tests don't really seem to tell you very much. If they come back neg. then it doesn't mean you are really neg. If they come back positive, could be that its a cross reaction with something else. My kid is sick and NOBODY seems to have any definite answers for us.

Your post made me go hmmmmmm. I have no idea what you are talking about!

The clindamycin seems to be bringing about slow improvements. The chorea is not gone, but she is beginning to use her hands again and mood is greatly improved. We'll get her checked for strep again 2 days after finishing the course of clinda. But I'm worried about what we should do for prophylaxis. Wish I could get me some of that PEX!

We tried one bicillan shot several years ago. Huge needle, very painful, and it took several visits after that for her to not be afraid to go into an exam room after that. Which still would have been okay, except she tested positive for strep 10 days after the injection.

Yep. Just did another last Friday.

She's slowly improving. Beginning to be able to use her hands again. She has reverted back to some old OCD behaviors, but the anxiety attached is not quite as strong as it used to be.

Maybe you should get a strep culture? I'm just saying, with my recent experience....

Happy to hear your update!

Oh, such very good, fantastic news. I'm so happy to hear this! :D

tick borne infection