peglem

Okay, I'm going to take the risk here of sounding ignorant (no pain, no gain). So the macrophages and phagocytes are already inside the brain cavity? Then the Tcells cross over and the antibodies are made onsite? This is very different from the way I pictured it...thought the antibodies themselves were crossing over.

Oh, thank God! I'm just a wanna be geek! I found the abstract and pictures interesting, but now that I understand them...WOW! Aaah, good point!

Beautiful news!!

peglem, Thanks for the reply. How did your find out that your dd still has carrier problems? Is she still culturing positive? Debbie Yes, she still has positive rapids from time to time. And it has been very frustrating when we go see specialists and they keep saying "she's just a carrier, she's not getting strep infections." Their implication is that carrier state is benign, cannot be causing problems for her, and a way for them to dismiss all those positive strep tests and hence, the correlation w/ exacerbations. So, I've been in denial about her being a carrier, because I know for sure that its not benign! Saw her pediatrician today...he's terrific! We're going to try combo rifampin/augmentin to get rid of the carrier state...then keep her on full dose augmentin for awhile- at least until we see Dr. Latimer. Funny, the pediatrician thinks I'm so smart- I keep telling him I'm learning from other parents...he's getting collective wisdom, not just mine!

so is that why the symptoms wax and wane, because the level of antibiodies goes up and/or down depending on how recently you were infected? What about these kids who have had PANDAS for years? For instance, my daughter has struggled with this for 3 years. This fall things got much worse and she was pretty much non-functioning. We had her aso and dnase checked recenlty and they were in the normal range. Yet, she just began antibiotics and she is already MUCH better. How does that work? Angela I'm only making an educated guess...based mostly off of Buster's info and explanations. My daughter has struggled with this since before Swedo started researching it! I think yes, this is why you see the wax and wane. My daughter's A&A titers have been low every time they were checked. She is a carrier (I'm just now learning to admit this!), she doesn't get infections...the strep hang out inside of her epithelial cells (intracellular strep) and when those cells die...the strep is released and triggers antibodies. Had a "der" moment yeasterday, when I realized that she always gets worse with teething/dental procedures. Whenever there is tissue damage...strep release and antibodies rise and we see a flare....looking back over her whole lifetime, this has been a pattern. I'll bet that's why, after her T & A, she had her worst episode ever...poor kid. BTW, she just turned 15yo.

My daughter has continued carriage after tonsillectomy. I think you're right to protect your daughter this way, but I bet you still feel really bad having to exclude relatives from your celebration. I admire you for being willing to do it anyway.

vicki and others, Yes I will add her to the 'docs who helped' post if we have any luck at our appointment today. Thanks for your tip about ibuprofen too. It did seem to help the one time I tried it. What does that indicate? Strangley, her vocals are much, much decreased over the last two days despite using NO abs.........however the other symptoms (mood & hitting herself) remain only very slightly decreased. Is it plausible to think that during the worst part of the strep infection ( the first three days) the symptoms were worse, but as her natural immunity fought back (the next three days onwards) she improved? Or would most kids continue with the same level of symptoms until the Strep was resolved? We have always treated her as TS........ thanks Its important to remember that the symptoms are NOT caused by the strep, but by some of the antibodies the immune system manufactures to fight the strep. Improvement should come when the antibodies are reduced. But, I can see where resolving the strep itself might reduce vocal tics...because while her throat is irritated, there are more nerve impulses sent to the brain-which are being "perverted" by the rogue antibodies. So nerve signals from the throat could be adding to the overactivity that is already being caused by the antibodies. If throat irritation is decreased- some of that brain activity is decreased as well.

Because PANDAS is caused by antibodies to strep instead of the strep itself, its possible to have missed the strep infection that triggered the antibody production. Strep does not always present with typical symptoms, so nobody may have thought to check for strep, or the strep infection may have occurred in a part of the body that is not usually checked anyway (vaginal, rectal...etc.) To further confuse the issue, the medically acceptable way to check for a prior, missed strep infection is to check the blood for presence of elevated antibody levels to exotoxins of strep( ASO, AntiDnase titers)...but, while high levels of those can confirm a prior strep infection (although impossible to say how long ago the infection occurred), normal levels do not rule out previous strep infections. The Cunningham test (still a study-they will be working on data analysis over the next couple of months) is thought to measure the effect of certain strep antibodies on basal ganglia cells in the brain. As far as I know (I really hope somebody will jump in here and correct me if I'm wrong), it has not been determined if other things/antibodies/toxins could possibly have the same effect... And to make things even more confusing....my daughter nearly always tests positive for strep when she's not on antibiotics (and occaisionally when she is), but seldom gets an "infection." She's considered a carrier of strep, which most doctors consider to be benign....I think they're wrong about that.

Antibodies don't last forever, but the body stores a copy of them so that it can mount a speedy attack next time it "sees" the invader. The antibiotics do not kill or fight antibodies- you're right about that. Abx are only to help prevent another bacterial invasion, so that future exposure does not trigger the production of more harmful antibodies.

Well, if they weren't all so busy treating our kids, we could get them a big bus and they could go on tour- hitting every major children's hospital in the country, starting with the west coast (for a change!).....The PANDAS mobile! hey how about a PANDAS treatment center on wheels? How cool would that be? Sorry....my fantasies running away with me!

You think the teacher has PANDAS?

how much does your cho;d weigh Allie (is that who you're asking about?) just crossed the 100 lbs threshold.

So talked to the pediatrician today about getting more aggressive with trying to clear Allie's strep carriage. He's planning on 10 days of rifampin + Keflex... Anyone have experience with this?

I think that's what they test for celiac's disease.

You have enough to do already-no use finding out the hard way! I can do those, but please don't feel stupid- just ask whenever you don't understand. CamKinase aka calcium/calmodulin Kinase II aka CamK - is a substance found inside of nerve cells that facilitates nerve signaling. Its importance in PANDAS has to do with the "Cunningham Test". Dr. Cunningham (University of OK immunology lab) is doing a study of blood serum from PANDAS and Sydenham's Chorea (SC) patients for what she thinks may be markers of those conditions..ie..high CamK activity and an assortment of antineuronal antibodies. DAN dr. Defeat Autism Now is an organization that seeks to find biomedical treatments for autism. A DAN doctor has training in and knowledge of their treatment protocols. PEX- short for plasma exchange- a procedure that filters antibodies out of the blood, and I think the exchange part is adding donor antibodies back in. Plasmapheresis is just the filtering of antibodies from the blood.

We[re scheduled to see Dr. L on the 8th of January. That's the soonest we can arrange to go. I think this immunologist believes my daughter's condition (which he considers to be autism-nother topic) is so severe that treatment wouldn't improve her quality of life appreciably..ie: make her normal. I get a lot of that. I've been up all freaken night with her and right now she's in the midst of a hellacious fit....what about MY quality of life?

I can do those, but please don't feel stupid- just ask whenever you don't understand. CamKinase aka calcium/calmodulin Kinase II aka CamK - is a substance found inside of nerve cells that facilitates nerve signaling. Its importance in PANDAS has to do with the "Cunningham Test". Dr. Cunningham (University of OK immunology lab) is doing a study of blood serum from PANDAS and Sydenham's Chorea (SC) patients for what she thinks may be markers of those conditions..ie..high CamK activity and an assortment of antineuronal antibodies. DAN dr. Defeat Autism Now is an organization that seeks to find biomedical treatments for autism. A DAN doctor has training in and knowledge of their treatment protocols. PEX- short for plasma exchange- a procedure that filters antibodies out of the blood, and I think the exchange part is adding donor antibodies back in. Plasmapheresis is just the filtering of antibodies from the blood.

Okay, Kim, I tried to read that in its entirety...and understand it. Here's what I got that I hope is right: IgG needs N acetylglucosamine in order to attach to Fc receptors. (I have no idea what those are) Also, IgA and IgG4 are anti-inflammatories. That's about all. I'll have to go back and read again when my brain is less mush.

Its typical and severe for my daughter.

I guess I was hoping to find out if they mean low IgA like way below range or if they were implying anything else.... (for my dd's age the low range is 34 and her IgA was 37) Our immunologist is not concerned about her low normal result. Thanks! My daughter's IgA is significantly below normal range and her immunologist is not concerned. She also is below range in IgG4 subclass, which he also doesn't see as constituting a deficiency. When I look up info on those 2, I only see that they think deficiency makes one more prone to autoimmune diseases-particularly with IgA. Over and over I read that at this time, they are uncertain of the implications of IgG4 deficiency. Her other IgG subclasses are in the low normal range, and total IgG is below normal range....

Thanks, Kim. This study doesn't have any results listed, but at least now I know where to look for them!

Here's the clinical trial I was talking about. http://clinicaltrials.gov/ct2/show/NCT0000...enia&rank=1 It was specifically for childhood onset psychiatric disorders, but that included schizophrenia. Schizophrenia is a scary word, but it is just a label for outward symptoms...those symptoms are scary, no matter what you call them.

I would thing ASO titer increases could only be caused by strep, since its a measure of antibodies produced against a strep exotoxin. I wonder if its only produced by group A strep though?

valerian root stimulates GABA release. I think that's why it works. I've recommended it to several adults with sleep problems (not because of their kids, like our sleep problems!) and so many are thrilled with it. I haven't tried it myself- I easily drop off as soon as the kiddos are asleep.

It really surprises and shocks me that nobody has ever called on us. There have been many times in a grocery store, parking lot, mall, down the street...when we've had to seriously restrain my daughter...sometimes it must look as though we are kidnapping an unwilling child. Afterwards, I think how odd it must have looked to bystanders. Except one time, recently, it happened in the doorway of the dollar store when we were exiting...I couldn't believe the way people were stepping over us- even with their little kids. I was so worried that someone would get hurt! How could they see what was happening and not be afraid, or at least concerned?