yes that is the sad part. PANDAS seems to be acute, BUT with saying that I think there are also cronic cases which often time dr's then don't look at titers so families don't get help and then kids are just labeled OCD. (which like autism I find to

[Guest guest]

yes that is the sad part. PANDAS seems to be acute, BUT with saying that I think there are also cronic cases which often time dr's then don't look at titers so families don't get help and then kids are just labeled OCD. (which like autism I find to be a junk label for symptoms and not looking at the REAL issues on WHY they fit that label and treat the SOURCES of the issues at hand) my soap box for the day

i think it GOES to cronic if it isn't addressed in acute phase

Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

Just saw this on NBC about PANDAS

Hey Christel – you touched on something important. I think that most docs, if they believe in PANDAS at all, are thinking that the child had to have strep throat – probably because that’s the only connection they make symptomatically. Most kiddos aren’t getting the kinds and number of blood work our kids are getting to detect it. So technically then, what this news story said was a little incorrect. Even the NIH article talks about PANDAS as being the result of an acute case of strep throat and the sudden onset of symptoms following. In our kids, we are seeing that the strep bacteria is somewhere in the body and the immune system keeps kicking up antibodies, which mistakenly attack the brain and other tissue, hence the autoimmune label. My son had strep throat three years ago. Has never had it again – yet his antibodies were extremely high, Strep titers high and he has the symptoms of PANDAS (except for the sudden onset). We did find some strep bacteria in a stool test which is what I suspect is kicking up these antibodies to high levels. We’ve never knocked them down b/c he never had ‘strep throat’ again and we didn’t know to treat it. Until our DAN! Doc ran the strep antibody tests.

BTW – my son has played with kids the past month who have strep throat and didn’t know it until later. Strep is carried for a long time by almost all school-aged children. We just had to become really good detectives in watching for the flare-ups in our kids.

From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of Christel KingSent: Thursday, April 02, 2009 11:14 AMTo: mb12 valtrex Subject: Re: Re: Just saw this on NBC about PANDAS

this isn't just strep throat, it's AUTOIMMUNE making of antibiodies and the body reacting even when it DOESN'T have strep. it happens from a damaged immune system. LDN PREVENTED flares for us.

PANDAS has nothing to do with viruses, it's bacterial. the definition of PANDAS is strep related, it's AUTOIMMUNE or antibodies being made to STREP and anti, antibodies which missread the brain, lungs, and heart AS strep and attack them. it can't be anything else or it wouldn't be PANDAS< it would be something else autoimmune. PANDAS IS NOT A SORE THROAT< this is the biggest peice of misunderstanding on PANDAS> you can have strep in the bowel, or simpley be exposed and the immune sytem mounts a responce, that is why there are blood tests to test where your kids is at

what YOU just discribed sounds like you had food allergies that were causing your issues if they got better with removing things, there are OTHER things that can cause regressions, IGG issues can do this, Opiate issues can do this as well.

Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

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