peglem

I'm confused about Cunningham's anti-neuronal antibodies. Particularly, the anti D1 & D2. Because, it seems to me like "anti" dopamine is something that would lower dopamine levels. But seems like everybody is saying the dopamine levels are higher? So, what is the effect of the anti-dopamines? Are they blocking the receptors? Are they turning on D1 & D2 by activating receptors? Just seems like this would be good to know, especially if one is looking at using psych meds- a kind of clue for what might be more likely to work.

What great news! Thanks for sharing!

Amen to that! My daughter has not regained her speech. Once in awhile between exacerbations we'll get a few words here and there, so I'm hopeful we can get some back with Pex/IVIG...or at least be able to work on it in speech therapy. When i think of all she lost...it just makes me ill, so I try not to think of it...I just focus on moving forward. Here are some sites that I googled that might work for explaining things: http://www.cyh.sa.gov.au/HealthTopics/Heal...152&id=2402 http://kidshealth.org/kid/htbw/immune.html This one has some video games to demonstrate: http://nobelprize.org/educational_games/medicine/immunity/ Well, here is the site that linked to all of those. Links to different body systems are near the bottom: http://www.kidskonnect.com/subject-index/3...human-body.html

Wow, how exciting to see somebody who gets it! WhooooooHoooooo for you!

Thanks, Buster. I love the way you make things understandable!

I wonder if it would help for him to get in touch with other kids who have had IVIG? Has he gone to websites that explain IVIG and the immune system? There are some sites for kids that give easy to understand (even I can understand them!) explanations of how the immune system works. Maybe talk about how he feels when he's raging and aggressive (I'm pretty sure these are things he doesn't like happening to him) and explain that the strep antibodies are doing that to his brain, and they are causing the depression and enuresis, and all those other difficulties, but they are NOT causing him to be a gifted writer, or a good artist, or very intelligent- those are things that are really him. If he can realize (different than knowing, I think) that other peoples' antibodies can help him shed the things that are NOT really him, w/o losing the things that are, maybe that would help? I can so relate to the rages/restraining/headbanging...the terror of it all as a parent. My daughter started young w/ this also...similar presentation, except she lost speech as well. She's been attending special needs schools all her life (and actually been asked to leave 2 of those due to behavior). She's 15 now and we are finally at the point where we think, just maybe we have some doctors who will treat with PEX and/or IVIG.

Oh, Judy, I'm so sorry it turned out this way. It sounds like he is just misinformed by the NIMH. Sure wish they would add new studies/information to that site. But, I think you're going to be well prepared for next time, though. When we saw the Rheumy on Monday-the same one we saw 2 years ago, so I knew he was misinformed. I told him we wanted to revisit the PANDAS issue in light of current research and did tell him that the NIMH sight was outdated, having only information gleaned from the pioneer work. The Cunningham studies (the ones she gave you with your test results) had been sent ahead w/ my daughters records from the pediatrician. The CamK numbers are meaningless to docs w/o knowledge of the research behind the study. He had looked at them, but only very quickly- I briefly explained my understanding (thank-you, Buster) of their significance, told him my pediatrician had spoken with Dr. Cunningham on the phone and invited him to give her a call- he said he would. I brought with me to the appointment: The mouse model paper- http://www.sarnet.org/doc/PANDAS_Mol_Psychiatry_2009.pdf which has very good evidence that PANDAS is indeed autoimmune. And these 2 on treatment with PEX, IVIG: http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf http://www.turkpsikiyatri.com/en/default.a...icle&id=592 He said he needed time to look over the studies. So he ordered some blood work (yes, those darn ASO/AntiDnase titers. ) and we'll talk more about it in 2 weeks. I suggest that you send the the information that Diana gives you before your next appointment, to give the doc a chance to look it over before hand...Its a lot of info, and it would be nice to spend the appointment discussing it instead of watching him read it! Also, try to avoid giving anecdotal info, like say, a discussion from this board...docs tend to discount that sort of thing. (don't want that crazyinternetmom label!) Good Luck (why do I want to call you sweetie?) and please keep us updated!

So, remind me, what's the diff between a T regulator cell and other Tcells?

Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, NIAID-supported Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2177 email: madeleine-cunningham@ouhsc.edu I first contacted Dr. Cunningham. Once she accepted my daughter into the study, she turned communication over to Kathy Alvarez who answered all my questions and emailed preliminary results. I haven't called her, but my doctor did when I shared the research papers and results w/ him. You'll want to ask for the PANDAS camKinase II study.

I emailed her a very brief medical history of my daughter and asked her if she could be included in the study. She replied yes and mailed out the kit for blood draw. What study? she is runing a study? Yes, the kit/blood draw is for a study she is doing...the testing she is doing is not yet FDA approved. She will give you 2 research studies that will explain to you and your doctor How the test was derived and the science it is based on. But, she's still running trials on the test.

I emailed her a very brief medical history of my daughter and asked her if she could be included in the study. She replied yes and mailed out the kit for blood draw.

Hi Lismom, I've struggled with this too and don't have a great answer but do have another theory to add to the mix... look to the end. On zith suppressing the immune system Yes, azithromycin is immuno-modulating (and hence somewhat immune suppressing) and is also an anti-inflammatory The immuno-modulating effect is that azith tends to move the T helper cells from generating Th2 cells (that lead to more macrophages and antibodies) to Th1 (NK killer cells). This has several effects: the increased NK Killer cells can go after intracellular strep fewer antibodies are getting produced (than without) less inflammatory cytokines are generated -- reducing inflammation Our immunologist believes the big benefit of azith was its anti-inflammatory property and wasn't a big believer that there was any strep left (intracellular or otherwise). On whether GABHS is acting like a virus rather than like a bacteria The results of high-dose augmentin seem to have helped several. This has made me wonder if perhaps there is strep lingering in the body (intracellular) but was left at such a low residual amount that it is not detectable by anything but the faulty immune system. Again, all just a theory, but what if the GABHS acts a bit like a virus -- think of chicken pox for a moment. The virus can live in cells for a very long time with no ill effect until it bursts forth and starts again. So perhaps what is happening is the suceptible child's immune system isn't quite strong enough to get rid of the GABHS that's in a cell (i.e., due to low NK killer cells or an inability to flag that the cell is infected). So every so often one of these cells "bursts" and the GABHS gets back out into the blood stream, runs into a T-cell and more antibodies are formed but some of the GABHS gets into another cell before the bodies found it and removed it. Perhaps what is happening is that with the high-dose augmentin, when the cell bursts, the GABHS runs smack into the antibiotic (which actually is bacteriacidal at that dosage level) and the GABHS can't get back into another cell before it is destroyed. This is sort of how anti-viral's work -- I wonder if that is what is happening here. No science here, just it seems to fit with what we are seeing. I think this waky strain of strep is acting like a virus rather than acting like an extra-cellular bacteria and thus has all the same problems. I really hope one of these doctors does an emm-type on this strain. Anyway, my thoughts, Buster This does sound as though it is exactly what is happening with my daughter! So, has anybody tried a combo of zithromycin + augmentin? Or would that be a problem for some reason?

Ask your doc. If he/she won't do it, call the lab and explain you need a sample for this study and see if they will do it. We asked at the lab when we were there for other bloodwork and they just drew 2 more vials for the study.

When my daughter has a dental procedure other than cleaning or check up, she has to be completely anesthetized, much like she was for t & a surgery....I don't know the exact anesthesia used, for each procedure- but at the dentist they only used the nitrous long enough to hook up the IV. I don't know if they used nitrous 1st for the t & a or not.

Here is a case study from Turkey, involving 4 adults whose PANDAS began in childhood. They responded to treatment. http://www.turkpsikiyatri.com/en/default.a...icle&id=592 I don't think anybody really knows much about the effects of treatment on PANDAS adults...there just haven't been many studies done.

No, we finished a 14 day course a week or so ago and are now back on zith prophylaxis.

The Fedex people asked me...I can't remember what I answered, but I mumbled it because I wasn't sure what the "right answer would be to have it sent- they took it.

I don't know what's standard practice. I think in our case, nobody involved really knew how to deal with PANDAS, or was even sure that's what it was. My daughter was not on real prophylactic antibiotics, but was on them so much from chronic strep that it was nearly prophylactic. I begged that month of Omniceph from the doctor because my hub decided he wanted to take the family to Disneyland before the t & a (what a disaster that trip was- NOT the happiest place on earth) and I was so scared the strep would come back while we were on the trip. The ENT who did the t & a thought PANDAS was a bunch of crap, that no way behavior could be connected to strep. So afterwards, we all were assuming that this would take care of the strep and the behavior was just because her throat was still hurting from the surgery...and nobody wanted to swab her throat because it was hurting from surgery....OMG, she was a mess when we finally figured out it was the stupid strep again. (I still wonder if exorcism would have any effect on strep!) So, that's when we started pursuing the immunology and rheumatology angle. And went back on the chronic strep/chronic abx cycle again..for a few months, then went through trials of prophylaxis w/ different abx...Right now we are using 500mg of zith, M,W,F. That's going to have to change....Sundays are ######! So maybe more than you asked for- but couldn't find a short answer!

Thanks Wendy!

But, I think the problem is that with PANDAS, its not so much "chemical imbalance" as it is instability...by that I mean, you can try to get the balance right, then along come the activating antibodies and the whole thing is thrown into chaos...even the imbalance isn't a stable one, so you'd need something that monitors the balance of all the neurotransmitters and adjusts all of them as needed- that's a pretty tall order! I've been, out of sheer desperation and pressure from school officials, looking for that magic pill. Tried lots of things...nothing seems to work better than a good dose of abx! Even with the diazepam...sometimes it doesn't help. Sunday and Monday of this week were very bad, and the diazepam really didn't help.

Well, I don't see how I could stop them from reversing...I'm dependent on them and the insurance company for treatment, and they are not dependent on me for anything. This is not a done deal yet, but I'm glad it is being considered by them...a step in the right direction is worth celebrating!

Not sure if clonidine is the same as Klonopin...but clonidine made things worse for Allie...she was only about 4yo at the time. But, we have been using diazepam (valium) as needed for a couple of years now. I don't think she could make it through a bllod draw w/o it. In fact the last time we tried that, we were kicked out of the lab by this bwitchy manager (she refused to follow the procedure we know to be successful). She's still difficult, but can be managed a little easier. It doesn't do a thing for her OCD, but takes the edge off the accompanying anxiety.

If you are allergic to amoxicillan, do not take augmentin...it is amoxicillan + something that "augments" it (clauvu-something that I can't spell!)!!

HeeHee! I think it makes you an AANDAS!

I've heard of this remedy for vag. yeast as well. Never tried it, but have friends who swear by it!