peglem

Wow! That's big! How wonderful!

Couldn't find the one I saw before, but here's a lit review on it. I skipped over it because I was looking for IgG4 deficiency, which is the case w/ my daughter. http://www.ijcep.com/files/IJCEP1005001.pdf

I was just looking up IgG4 stuff and came across an article on autoimmune pancreatitis. Want me to see if I can find it?

http://pathmicro.med.sc.edu/mayer/IgStruct2000.htm I like the bottom, especially, where it tells possible reason's for hyper/hypo immunoglobulins.

Oh Dawn, you made my day! So relieved to hear things are moving in the right direction. Thanks everyone!!!! This is the granmother of DD My daughter is so distraught that I am going to move into this situation that I have been watching and crying with for 1 1/2 years. I get that Dr. Geller yes that Dr Geller that she is seeing is only on the med pyscho route and Dr T is helping her with other problems besides PANDAS, but his input no to IVIG. This grl is in pain emotionally, and I say off the crazy meds and time to try with Dr. K. We will take the chance and if it fails I will take the blame. Thank you so much for helping my daughter in this forum. Dans Mum What a wonderful grandma!!!

Exactly my daughter- really! Her pediatrician thinks the PANDAS caused the autism. And prior to discovering the PANDAS, he used to say she wasn't like most autistic kids- Zith is what works best for my daughter....except- last December (and again last month) we did a ten day course of rifampin w/ full strength augmentin. This always whips up the yeasts- but when we get rid of the yeast afterwards (diflucan), she does VERY well- better than I ever thought she could. Just thought I'd share that. BTW, my daughter's rages and SIBs started around 18 months old as well.

Arizona But the sequel to that is he could not find local specialists to help- the rheumatologist referred us to Dr. Latimer and we had to take a trip to see her. Then the immunologist did finally consent to ivig, however he went for low dose...but finally we did get 2 high dose ivigs. But, Allie's pediatrician is our angel!

My pediatrician was fascinated and after reading both studies, he called Dr. Cunningham (who he said is a very smart lady) and spoke with her about the implications. She told him it was like rheumatic fever of the brain and referred him to dr. Latimer w/ his questions about treatment. Dr. L spent about 20 minutes talking to him on the phone (he said she was very kind and extremely helpful). Then he set about finding local specialists to help with treatment. And since he also teaches classes at an osteopathic school of medicine, he presented my daughter's case to his students as a case study. He was also very excited because he recognized that he has a couple of other patients with PANDAS who he knows how to help now, as well.

Something I noticed from the Sammy story on Mystery Diagnosis (I've never read the book) is that, though they stated that the psych meds did nothing, he got worse when on them and even worse when they kept raising them. Before we knew my daughter had PANDAS, we tried a LOT of psych meds- they either made things worse or made no difference.I think if you're dealing w/ residual anxiety or OCD after you have PANDAS in remission, therapy can help to banish those- but if you're still seeing wildly out of control stuff, you're probably not in remission. Oh, nice analogy! One more point I'd like to make- If your child had cancer, you'd most certainly see an oncologist who has extensive experience in treating cancer. I'm not comparing cancer to PANDAS, just saying you may need somebody who specializes in treatment of PANDAS because its not something that most doctors really know what to do about.

How do you know the strep has been gone for a long time? The docs that have followed her and know her- is their treatment helping her? It sounds like they are following the outdated advice from NIMH. Dr.K has treated many more cases of PANDAS than probably anyone in the world, so, although he may not know your child- he knows the enemy she is fighting very well!

Originally, our plan was to do PEX and follow up w/ IVIG, but could not get a doctor to rx PEX, so we went with IVIG only, because that was all we could get.

You might want to check out the PANDAS/PITANDS forum. Even if you don't think your child's OCD comes from an underlying immune problem, there are parents on that forum w/ expert advice on helping your child get control of obsessions and compulsions.

Oh, you are so funny!

Please get your son tested for strep, even if he does not have symptoms. For many, many children strep triggers an autoimmune disorder that can present as autism and behavioral symptoms- and many of those children do not have typical step symptoms. I don't know why you are so opposed to all manufactured medications, but if your child is suffering you need to find out why and find a way to treat him.

Wow, wish my kid did that- instead of thrashing around with super human strength! I mean, yeah, it would freak me out (at first), but would be so much easier to get blood if she was unconscious!

I don't know if that is misinformation or not, about the strep S.pneumo connection, but I think we do have info on the s.pneumo titers in the general populaton. That's one of the reasons immunos use this to test the immune response, because it is known what the normal response should be. And, 3 years ago when my daughter's immuno did this test on her (I think he was looking to prove there were no immune problems, so he wouldn't have to treat her-but that's another story)- he took a baseline measure of s.pneumo titers (she'd not had any pneumo vaccine before), then vaccinated w/ pneumovax and took another sample to compare to baseline. (there should be a fourfold rise in titers). There was almost no response. So, he decided to revaccinate and pull titers again. The second time he decided the response was strong enough and I received a message from him via his nurse- "The vaccine jumpstarted her immune system and she should have less frequent strep infections." Well, she didn't! But it sounds like HE thought there was a connection between the two.

Well, the ASO and Antidnase are not the antibodies that cause PANDAS. But, if my child has antibodies to strep antigens cross reacting w/ body tissue, she must be making some antibodies to strep, right? On the other hand, she doesn't seem to make antibodies that actually attack the strep, or at least if they do attack, they don't kill it.

Titers=antibodies. In the case of ASO and antiDnase, they are measuring antibodies to exotoxins produced by the strep, not antibodies to the actual bacteria. The tests can confirm a strep infection in the recent past- but negative (low) titers do not rule out a recent strep infection, because as somebody already said, some children do not produce these antibodies- even w/ a confirmed culture positive for strep (which is, of course, the best evidence of a strep infection). Amy, Here's what I don't understand- if a person is immune deficient (my daughter is) and doesn't seem to make antibodies efficiently in response to strep bacteria, then why would they be able to make the antibodies that cross react w/ the basal ganglia? My (poor) understanding is that the antineuronal antibodies are antibodies against strep antigens (a normal immune response to it) that then activate receptors on basal ganglia cells.

Our insurance paid for Dr. Latimer at in network rates. The local pediatric rheumatologist refused to treat our daughter, based on the fact that he had no expertise w/ the disorder. After discussing it w/ dr. L on the phone, he referred us to her and I called the insurance company to get pre-approval for a "gap exception" based on the fact that they did not have an in-network physician who had expertise w/ pandas. We have UHC.

Dr. Cunningham is a research scientist, not a clinician. She does not treat or recommend treatment. But, my daughter's pediatrician called her when I showed him Allie's study results and she was wonderful about explaining the study and what it means. Then she referred him to Dr.Latimer for treatment information- When he called dr. Latimer, she was also very responsive about helping the pediatrician figure out what to do.

IgE and IgA deficiencies are not well studied and they are not sure yet what the implications are, so they are often disregarded by practitioners. The IgGs are much better known (although they still have a lot to learn) and is what is replaced by IVIG, so those will be the ones most physicians will focus on.

Like IgA deficiency, it increases risk of autoimmunity. That's about all I can find about it.

But....well, is your child showing symptoms right now? I'm asking because I think the CamK score is more meaningful in context of symptoms. Remember, that first of all- this is still in the study stages. And, since the sample came from the blood, and not the CSF, you can't be sure that brain CamKII activity is actually elevated. If the BBB is doing a proper job- it should be keeping the offending antibodies out, and this is something that prednisone does help with.

I don't think asd will be put on the spectrum w/ pandas/sc/tourettes, because, although I believe the latter can cause symptoms of asd, there are many disorders that can cause asd symptoms.

Okay, back to 6th!!!!