Question from a Newbie

[rowingmom]

Many children here have adverse reactions to anything other than very low dosages of psych drugs. If you think this may be the problem search the archives - there have been plenty of postings on this topic.

[JoyBop]

I'm not so sure that a strep test is a definitive answer. Even if there was a strep infection and it is gone now, the damage could already be done and the disorder is already set Into motion. I think its tremendously helpful if you are able to catch the infection while its hot or smoldering because you have another piece of the puzzle, but for many kids the strep infection came and went months or years ago but we are still dealing with rages and flares. It's like finding the tic that bit you. If you find it GREAT!!! But chances are, many of us don't ever see the tic or the bite. The blood tests aren't very accurate either. Does that mean there is no lhyme infection if all the clinical symptoms are there? Not necessarily. Some kids don't even make strep titres at all! Unfortunately I think we loose a lot of pediatricians attention when we bring fourth all of the literature and then Fail to produce the infection. What we need for the literature to portray is that this can become a chronic condition that can exist even after the strep infection is gone, even after years of appropriate treatment.

 

Our ped actually brought up the possibility of pandas and looked up the medical literature. My child wasn't sick at that time (but had a strep infection 6 months prior). He read the literature and said, no..it says here that it happens with an active strep infection and goes away with standard treatment. We all know a standard single round if abx isn't going to cut it.

 

Dritan agillou presented his research at the pandas conference. He was able to reproduce pandas in mice and then look in their brains to see exactly what cells were where and how they entered. He also discovered how long these th17 cells remained in the brain. In a mouse whose expected lifespan is 2 years, these cells remained for 58 days. That equals roughly 6 years in human life. It was also expressed by many drs that anytime the immune system is heightened or even if the child is emotionally stressed that it weakens the BBB causing all of the inflammation to get stirred up and cause another flare. Don't we all notice those ups and downs correlating to illness around them, stresses at home or I'm school?

 

I'm not trying to be a Debbie downer, just trying to point out that sometimes you don't catch the infection in action. Those are usually the kids that have it the worst because the longer it goes untreated the more difficult it can be. In the end, we are told none of this is permanent and that they will all get better with treatment. We are all on the war path to get that treatment , no matter what it takes. Don't give up.

 

Choose your position wisely with your doctor, or better yet, find one that you do t have to do that with. There are any outstanding pandas docs and they are worth the wait and the travel.

[3bmom]

I would try to find a more knowledgable Dr. PANDAS is multifaceted and very grey in its testing. Most Dr want a blood test to be definitive with a definitive treatment.

 

Also PANDAS has exploded just like Autism and ADHD since the beginning of the 90's. These disorders are very new in the medical timeline and something most Drs have not seen before and are having difficulty wrapping their head around it.

 

I look at it as an onion. Each layer of inflammation you address that is a little less inflammation on the brain.

 

Infections, viruses, environmental toxins and diet. Especially diet. We changed our wheat in the 80's and in the 90's started genetically altering our food. It is not coincidental that GMO food which our immune system does not recognize came on the scene the same time as all these brain disorders.