peglem

And if your principal claims his hands are tied, go to the superintendent.

I PM'd you!

Its likely the dog allergy. I have a daughter w/ a cat allergy and the cat does not have to be present. All it takes to trigger symptoms is to be in a place where a cat has recently been.

Well, the usual testing is to look for IgG and IgM antibodies to the pathogen. Those survive the bacteria for several weeks, so should still be able to test.

My thought was that since you have symptoms of other autoimmune disorders, that treatment for them might improve your OCD, if it is also autoimmune in nature. I think you'll have trouble finding any regular adult physicians who will help with PANDAS. If your regular physician is willing to run some tests...I would start with at least an immune panel. Also have them run ASO and antiDnase titers (checking for history of strep), and shoot, may as well get a throat culture for strep. Many PANDAS people have strep w/o typical symptoms. And, as long as they are drawing blood...may as well check for mycoplasma pneumonia and celiacs disease. And if your doc is very cooperative-have a lyme panel done as well.

http://clinicaltrials.gov/ is where you can learn about studies. Do a search for obsessive compulsive disorder.

I don't think it has been well studied in adults. But, I wonder if you see a rheumatologist for vitiligo and/or Raynaud's?

Are you tapering them down yet? I think you have to taper off of steroids if you've been on awhile. The body needs to slowly recover its own production. So if you're tapering, continue the taper until you hear from the doc.

Once the strep was discovered (1st swab at 10 years old), I could predict positive strep just by behaviors (over the top ragey).

Ibuprofen reduces iron? Crap! Allie was a bit low on her last blood draw.

If you try this with your daughter, please let us know what happens! I did try galantamine for Allie- years ago, when she was 7. It gave her headaches and made her ragey! What has worked better for her is CLO and bethanechol (which mimics acetylcholine in the body). Friday was Allie's last day of the regular school year. I've taken her off of everything except ibuprofen and her nighttime melatonin/valerian. Gulp-no zith! I want to see if her regular flora can stabilize. I guess if she gets sick, we'll at least be able to figure out what the heck is making her sick!

Consider yourself validated! Its not stubborn, defiant behavior and you probably won't fix it by going to battle anyway. Some times you just need to do what you gotta do to stay sane.

Peg -- So sorry about that reaction and, frankly, a little alarmed by it. What is the prognosis? Does it/did it clear over time? Was there a treatment for the reaction, in particular? I can only find reference to a "lupus-like reaction" in the literature, and this is noted as being a "post marketing experience," i.e. independently and voluntarily reported, without any studies duplicating it. So just wondering how you're dealing with it? She's mostly recovered from it. Once she tested positive for strep in the hospital, they put her on clindamycin for 2 weeks and rx stength naproxen. But following that she tested positive on rapid/neg on culture twice- so I really don't know if she had strep or not and neither the rheumy or the psych thought it could be caused by the lamictal that long after being off of it. So we're left wondering...could have been a combo of the lamictal and other things, I guess. Lamictal does have a reputation for interacting with other drugs. Anyway, I'm glad she's off of it. I wonder if the lamictal itself was masking the lupus symptoms and then when we went off it- the anti-histone antibodies persisted past the lamictal clearing her system, as antibodies have a longer half life than the medication. If you see things while your child is on a lower dose- its a lot easier to get them off of it. Allie was on 200mg/day when I started to wean and I took it very slowly- In hindsight, I wonder if some of the smaller lupus episodes we saw were the result of reductions- I didn't correlate because she's got so much going on all the time and its hard to tell (especially since her communication is so poor) what is caused by PANDAS/female cycle/bad day... At any rate, drug induced lupus does go away when the drug is withdrawn.

My daughter had been on lamictal for @ 4 years. I finally got her off of it in February of this year. A few weeks after she was completely off- she got a lupus like thing. That's when I found out that lamictal can cause drug induced lupus- so that is another possible side effect. Still don't know if it was the lamictal that caused her problem, since she had been off a while before the lupus symptoms started, and she tested positive for strep. But her anti-histone antibodies were elevated and that is a marker for drug induced lupus. We had a few more minor lupus like episodes previous to going off of it- but nothing as bad as what we saw after.

Those titers indicate a recent past strep infection. Those are not the antibodies that disrupt basal ganglia function. In the face of frequent strep infections and aspergers symptoms there is a good chance that the 2 are connected. There is not a lab test (yet) for PANDAS. Its a clinical dx. If the aspergers symptoms improve w/ abx and/or motrin, there is a VERY good chance that it is PANDAS. Also, if the aspergers symptoms suddenly worsen w/ infection or exposure to an infected person.

Probably many people with autistic symptomology have PANDAS. But there are many things that can affect parts of the brain and interfere with development or cause regression in development. Just my opinion.

Bolding mine- But that's the other frustrating thing about the autism "dx"- everything is looked at through the autism filter and a special autism vocabulary is applied. OCD is rigidity or needing to stick to a schedule. Chorea/tics are "stimming". And to make matters worse- schools reinforce the ocd by insisting that autistic kids need a strict schedule. And many programs work at extinguishing "stims"- you'd never do that to a kid diagnosed with tics.

There is a researcher, Dr. Madeleine Cunningham, who is attempting to develop a test. She checks serum for 4 strep related anti-neuronal antibodies, and to see if it triggers high CamK II activity in brain tissue. I don't have the link to her study- hopefully somebody who does will chime in here. Her research is not complete and the test is not FDA approved, but she does have some interesting preliminary data. You need to pay out of pocket for the test as insurance will not pay for participation in a study. Other than that, there is not a blood test, or any other test that I know of. Apparently that study is no longer accepting new participants: http://www.latitudes.org/forums/index.php?showtopic=13665

Well, you can tell by my signature.... I think PANDAS (and associated immune problems) caused my daughter's autism. But, remember- autism is just a label for a set of neurological symptoms. Usually the cause of those symptoms is unknown and sadly- once they call it autism its hard to get anyone to investigate the cause. Attributing it to autism is like saying the symptoms are causing the symptoms. Too much frustration for me all these years. I have to really work at not being bitter about it.

I feel ya! Every time we think we've got strep under control...here it comes back again, and even though I should be used to it, every time I hear she's positive for strep- its like somebody just hit me in the chest with a sledge hammer. I'm stunned every single time and I can't even keep the tears out of my eyes at the doc's office. So, believe it when I tell you that I'm very, very sorry this is happening to you guys. I hope you beat the crap out of it this time! But, it is nice to hear that you've got a lot of support.

There is a researcher, Dr. Madeleine Cunningham, who is attempting to develop a test. She checks serum for 4 strep related anti-neuronal antibodies, and to see if it triggers high CamK II activity in brain tissue. I don't have the link to her study- hopefully somebody who does will chime in here. Her research is not complete and the test is not FDA approved, but she does have some interesting preliminary data. You need to pay out of pocket for the test as insurance will not pay for participation in a study. Other than that, there is not a blood test, or any other test that I know of.

AntiDnaseB is an antibody that is specific to a toxin excreted by GABHS. It is NOT the antibody that causes PANDAS and is used as an indicator that somebody has had a strep infection. It is not diagnostic for PANDAS at all...the normal immune system makes this antibody when exposed to this toxin from type A strep. So, yes, its possible and probably very common to have elevated antiDnaseB, but not have PANDAS. Its also possible to have PANDAS w/o elevated antiDnase or elevated ASO.

Well, no staph grew out on culture for us. Two weeks ago we had another positive rapid, neg. culture, but the ped asked the lab to try to find out what kinds of bacteria were present in the sample. They said there was normal flora, but some bacteria they couldn't identify as well. So, now, the theory (according to ped) is that there is some other kind of strep that presents the antigen that the rapid test identifies. The rapid test works by identifying an antigen that is highly specific for GABHS, so a positive rapid doesn't happen unless that antigen is present on the swab. So, either there is another bacteria presenting a very similar antigen, or my daughter has constant GABHS that will not grow out in a petri dish. I find it interesting that so many PANDAS kids are experiencing +rap/-cult. Maybe we have some kind of mutant pathogen!

Is the pdoc the one who prescribed the lamictal? If you just want med management for the lamictal, keep the prescribing doctor for that- but do not expect a psychiatrist to offer more than psych management, unless they are special like dr. Murphy- that is what they do. A psychologist could be able to help with strategies and techniques for dealing with the OCD. I find that it is often not necessary for all doctors to believe and treat PANDAS. Sometimes you can just use them to help with whatever symptoms you want them to treat. I have a pediatrician who is a great advocate for us(and that has caused some problems for him, professionally), but we just use specialists to deal with specific issues.

Oh, Wilma! Thank God! I've been so worried about your girl! You and she definitely deserve a break from suffering.