peglem

Wow, she was way more informative than that doctor on the Today Show! What a great interview!

Well, the bee thing is a reasonable fear, I think. Shouldn't the school be doing something to protect ALL the kids from bee stings? I mean, after the 1st time a kid got stung, they knew they had a bee problem. So, why don't they either have the bees removed and let your guy eat lunch indoors? Should it take a 504 plan to solve this problem? Seems like common sense to me.

Either that or she just wasn't able to hold the titers results for an extended period of time. It would be interesting to see what her response would be to the Pneumo titers blood work two years later. I agree. We're awaiting the results of her IgG subclasses right now. Total IgG is a bit low, IgA is VERY low, but IgA was only slightly low 2 years ago. Her pediatrician is running the immune panel himself, to see what, if anything he can offer the immunologist as proof of immune deficiency. The pediatric immunologist in Phoenix played the autism card to explain her behavior 2 years ago.

We have not done IVIG or PEX and my daughter is too old to have had the prevnar vaccine. @ 2 years ago she saw an immunologist who ran a baseline pneumococcal titer, which she failed, but as I said she hadn't been immunized yet. Then he gave her a pneumovax (not prevnar) and retested after 4 weeks. She failed that and was vaxed 1 more time. She responded to the second one and subsequently showed titer coverage. The immunologist claimed that he had "jump started" her immune system and she would not be getting so many strep infections....he was wrong. The chronic strep persisted...so she must just be a carrier.

Kim, thanks. Her doctor is amazing...he's the only one who has ever believed me, but he needed more evidence to get the help she needs. Its so fun (for lack of a better word) to see him light up with excitement when I bring him information. God bless him, and Cunningham, and Latimer, and .....all those people who are carrying on with this work in the face of naysayers and professional criticism. Shaesmom, Thanks. That may be what he means, but i think he said once/month. We'll find out more when the rest of her labs come in, and that, hopefully, will make it easier to decide what to do.

My daughter's pediatrician is running an immune panel on her in response to his discussions with Cunningham and Latimer. He called me this morning, all excited (he loves that he's finally figuring out what is happening to my child, and is finally going to be able to help her) because he got part of her test results- pretty severe IgA deficiency. Anyway, he was talking about an IgG injection, instead of infusion....I've never heard of this. Anybody know what he's talking about?

After reading that abstract, I'm getting really confused. Are there hordes of tourettes and OCD patients clambering for antibiotic treatment? They make it sound like this is the case...

Grant said as many as 10% of OCD kids may be PANDAS. Shulman, from Chicago said (sarcastic paraphrase) that diseases don't exist until scientists prove they exist.

We have had a small success with making a "safe place" (padded all around) for her to go to when the urge to injure comes up. She will go there if we remind her, then we can go with her and help her avoid the other injuries. Getting her attention with chants, rhymes, songs that require her to do her part help to refocus her. And valium sometimes helps-I hate giving it to her, but she has ended up in the emergency room with self injury, so when I have to choose....what a Godawful choice for a parent to have to make!

From @18 months old: head banging on walls and the floor, later started biting hands and wrists, over the years has added punching herself in the head, kneeing herself in the face, slamming herself in the hips w/ elbows. She used to do a lot of pinching on her arms and thighs, but hasn't done that in a while. She doesn't want o do this, wants us to keep her safe, and we try, but we take the beating when we interfere. She tries to "keep her hands nice" sometimes, too. The urges overpower her though. This is the absolute worst part of this whole thing for us....

I have not shown videos. She lost it a few times at her pediatrician's office, so he knows how bad it could be. W/ the autism dx, the specialists just say it is autism behaviors, or worse, psychosis-go get that girl some antipsychotics! That's exactly it...They see our children for 5 minutes, while the kid is putting all their energies into holding it together. It really opens their eyes if they get to see an actually rage or meltdown.

That's exactly it...They see our children for 5 minutes, while the kid is putting all their energies into holding it together. It really opens their eyes if they get to see an actually rage or meltdown.

My daughters problems have been going on so long, it seems like her whole life has been one huge exacerbation! But, I think, actually the bigger episodes correlate more with the school year than with her birthdate...October 1st.

Well, I know its not the trend, but my daughter is extraordinarily aggressive and ragey...even among autistic kids at her sped schools.

How very kind of you to offer! I may end up taking you up on that...but we may feel better with a hotel, just because my daughter is rather destructive at times and I'd feel awful if your kindness resulted in something horrible happening at your house!

My understanding of the Cunningham test: It tests for 3 particular strep antibodies(not ASO or AntiDnase- which are actually antibodies against strep exotoxins, not the bacteria itself) that they believe are "cross reacting" with brain cells. They test for some other anti neuronal antibodies as well. But the crux of the test is they measure the reaction of brain tissue to the serum from your child. Inside of the neurons is a substance called calcium/calmodulin KinaseII (CamKII). This stuff is a kind of catalyst for neurotransmitters-the signalling doesn't happen w/out it. But, what they measure is how active the CamKII becomes when exposed PANDAS/SC serum...specifically how much MORE active it is as compared to normal. Its this overactivation of CamKII, stimulated by the antibodies they test for, that results in the behavioral symptoms we see in PANDAS. Does that make sense?

I think the plan is to try to get it done locally. I've never taken my daughter on an airplane, but I would guess that would be pretty near impossible w/o anesthesia. And it'd be at least a 2 day drive to try to get there by car. Right now, her doctor is trying to collect evidence to present to a specialist (immuno or rheumy) to get them to order it. I feel so blessed in having this doctor, and this forum. You all lead me to this with info on Cunningham (another blessing) and Latimer (another blessing). We knew this was PANDAS 4 years ago, but the only info her doctor had on it was the NIH site (wish they'd link to updated information) which basically says to treat psychiatric symptoms psychiatrically and save IVIG and PEX for severe cases....but doctors who don't see this much don't know how severe "severe" is. Her doctor tried to enlist the help of an immunologist and rheumy in the past...but with nothing else to go on, we got nothing! Erica, yes, I think Allie's doctor is such an angel! I know it takes a lot of courage for him take this path for us, God bless him! It shouldn't be that way, but I think he's risking other doctors thinking he's crazy for entertaining these "ideas" of mine. I would hate to see his career damaged by this...that would be a real injustice. I'm feeling less conflicted over things today and more celebratory! YIPEEEE!!!!!

I think so. Something like Atypical, Recurring Sydenham's-ARS. I think associating it with a known disorder will help it be more easily accepted by the medical community.

Well, Allie's pediatrician called me back (after hours, sweet). He had a long consult with Dr. Latimer. I'm so emotional right now. She basically confirmed what's going on, and has helped him put together a treatment plan, and helping him find a way to get insurance coverage. (crazy, my daughter has a primary insurance and the state supplies secondary insurance, and still this is a problem?) She told him she thinks plasmapheresis (is that the same thing as PEX?) works better, especially for the older kids. She encouraged him to use steroids as needed...he was worried about safety w/ those. He already ordered an immune panel for her today (after the Cunningham call) and said that's exactly what Dr. Latimer said to do. Earlier today, he and I had talked about the autoimmune part of this. I said my understanding was that what was going on was that the antibodies were were causing chaotic neurotransmission in the basal ganglia. He thought they were attacking and destroying cells. He told me, that according to Dr. Latimer, I was right. I see that as good news. It feels extraordinarily good to have this finally validated... But, this thing has stolen her childhood...her ability to speak, to make friends, to learn...and that sickens me. Maybe her ###### is almost over...that's exciting....I don't even know what to feel from one moment to the next. And, he said this is so interesting the way this is happening, because he had a 7 year old little girl in his office today that he thinks is having the same problem! But he's not sure the mom understands what he's talking about. I gave him permission to share my phone number and info if he thinks that will help. I told him I thought there were a lot of kids with this, who were just treated psychiatrically...he and Dr. Latimer discussed that as well, and he agrees. I think he will share this information with all the practitioners at this doctor's office. Its a large group, with 3 offices, so that's a lot. And he always had med students doing internships. The other thing is he had the same med student with him today and last week, he made sure she sat in on all of this. The med student asked him today if all his meds students see Allie...he told her yes. She thanked me as we left and said she learned so much from us!

I had thought when I watched the clip, that the doctor on that show was the physician who treated and "recovered" Sammy. They never said that, but it seemed implied. I am assuming from commentary here, that that is not the case? Sorry, I haven't read the book...why didn't they have the physician who treated him on? So, she was like a rebuttal witness?

And why did she mention conditions that were not even part of the presentation...behavior problems, autism? These were not mentioned on the show. Are they in the book, maybe? Hmmm. Good observation. I didn't even think twice about it. You'd think doctors would be say "yipee" about this...something that may help a lot of kids with problems that, frankly have been not very successfully treated in the past.

Logically, I feel like I should be celebrating, but I'm so afraid to get my hopes up. I sent a copy of the Cunningham study and Allie's test results to her pediatrician. He called Dr. Cunningham and spoke with her. She explained it all to him and recommended Dr. Latimer. We live in Phoenix... Anyway, he put a call in to Dr. Latimer's office while we were there today. The office staff told him this sounds like something she would be interested in and she'll call back when she can. He's going to consult with her on treatment options. I do feel blessed to have found this doctor...he's a gem.

The flip side is...my child has it much worse than Sammy and it does not make it easier to get treatment. And if it starts young enough, the connection to strep is harder to find because it disrupts development. So you don't have this picture of a "normal" kid spiraling into madness. You have a kid with abnormal development who goes through hellish periods of regression.

Discovery Health is the channel that broadcasts Mystery Diagnosis.

Wow, that is exciting- just the possibility that something could, maybe happen... It would be cool, also, for someone with a recovered child to get their story on one of those mystery diagnosis shows.