peglem

We are in Phoenix, Arizona...right next door!

Hey, ya know what else? He's not in the eastern part of the country!

My daughter's pediatrician has been so excited since talking to Dr.s Cunningham and Latimer about My daughter's CamK results and treatment...He is a professor at a Osteopathic University satellite Campus here. He presented my daughter's case to his class this week. He so wants to make sure that other doctor's have this info, and can save kids from it. He sent in another of his patient's blood for the Cunningham test, because he thinks that patient has the same thing going on. I gave him a copy of the Mouse Model paper(thank you PANDAS Denmark! for locating that for me!) today...He was so thrilled! "This is the Columbia paper that Cunningham and Latimer were telling me about!" he said. We will have to educate the rheumatologist to get my daughter treatment (and how many kids will that help?). I wish this referral stuff didn't take so long...but, God bless this pediatrician for being so consciencious about spreading the word!

I've heard plenty of people who say it has been great for them. I've tried using it for my daughter to help her sleep...and it does do that, but 1st we get a big, hellacious rage (I'm talking demon-possessed type here)...so we don't use it anymore.

What your immuno said sounds right to me...But, it doesn't make sense to just remove the antibodies without doing something about where the antibodies are coming from in the first place-so giving her IgG at the same time makes sense to me, becaue the donor IgG will help her body to fight off the strep (we don't think we're ever really eradicating it)....then, if she's not self re-infecting, we have a better chance of prophy. abx being effective....

Its kind of my own wondering...but i can't find the insurance doc. I was reading

But, do you see what I'm getting at? You've already tapped into the circulatory system...you need both procedures...why go through 2 ordeals? Why not give her the IgG's to help her fight strep at the same time that you get rid of the bad antibodies (I don't want to give her time to make more). There is a lot I don't know about both procedures... The reason I thought about it is when I was looking for insurance criteria for PEX....I couldn't find it listed, but under apheresis, it listed several kinds (3? I don't remember). But it seems like one was just to filter blood (like what they do for Rh sensitized newborns), but another kind was adding in donor plasma....so is plasma exchange a combo of both?

So, my daughter has PANDAS + an immune deficiency and I'm thinking about is it better to do PEX or IVIG...and then it occurs to me...Why couldn't both be done at the same time: Plasmapheresis, filtering out the antibodies and adding in the immunoglobulins at the same time. Why not treat the autoimmunity at the same time that you treat the immune deficiency? So am I crazy? Has this been done? is it even possible to do it?

Faith, my daughter managed to develop some speech, despite the PANDAS, then THAT has been completely lost.

Wow, Thanks!

I've only seen articles about the mouse model, not the actual article or even the abstract, but I was wondering if there was a particular strain of GABHS that was used to produce the PANDAS reaction in the mice? Seems like it would have to be a strain that presents the particular antigens that Cunningham is finding antibodies to...or is it the child's immune system making renegade antibodies? Oh, wait, I found the abstract: http://www.ncbi.nlm.nih.gov/sites/entrez It says So do all GABHS strains have the M protein? Oh, wait, I see the link doesn't take you to the abstract, so here's the index# PMID: 19668249 [PubMed - as supplied by publisher

Remember, its not high levels of CamK- its high ACTIVATION of the CamK. I think we do know that it is caused by the strepA antibodies- remember the mouse model, they were able to produce PANDAS in the mice with just the antibodies, w/o the bacteria. But, I don't think its clear whether or not pathogens other than strepA can cause the creation of antibodies that have the same or similar effects. I think that falls under the category of "hasn't been studied." It wouldn't surprise me though!

Faith, my baby didn't really develop language as an infant...by age 7 she had about 100 understandable words-but she was on her way in speech therapy (I think her PANDAS started in infancy)....then suddenly every speech attempt turned in to "puh, puh, puh" and then even that was gone. Every once in a while, when she's not doing too bad, a clear, appropriate word pops out...its still there.

The ANA that is usually run to check for autoimmune disease is an Anti Nuclear Antibody tests. It checks for antibodies that attack cell nuclei... PANDAS is a different sort od autoimmune disease in that the antibodies doing the damage are not attacking cells, just erroneously activating them

Peglem, You hang in there. I know how strong and broken we are at the same time. I am seeing HEALING before my eyes and she is 9. I hold out hope for each and every one of our kids. Get that ivig and I know that it will get better. BIG HUG to you! Our immunologist is Dr. Denis Bouboulis in Darien, CT. Dr. Leckman referred us to him for local follow-up. Dr. B. and Dr. K have consulted with each other. Most importantly, Dr. B is open to reading and learning from the parents and his ego is left outside. He responds to emails and calls you without ever making you feel rushed, stupid, or annoyed. Additionally, we spoke to him about PEX vs. ivig. His opinion, PEX is much like "dialysis" -- removing and cleaning all the blood. He feel that you would still need to do ivig post pex for a period of time, because it does not build up the immune system. I hope I am phrasing that correctly. Coco Thanks, the most horrible thing is that once she got the autism dx, doctors acted as though that explained everything, thought I was in denial @ her dx when I wanted things investigated. Now that we finally know what it is- well, there's a lot of anguish for me that her entire childhood was lost to this. My new mantra is AUTISM IS NOT A DIAGNOSIS!!!! It is symptoms of something, not necessarily PANDAS, but objectively, its just a description of behaviors (or lack of them) that psychiatrists got together and decided to call a disorder of unknown origin! Anyway, I finally have some real hope that we'll be able to do things that will help her...

CoCo, My daughter is 15, severely autistic and I too think all this misery and loss of development is PANDAS. The chaos in the basal ganglia impaired her ability to make sense out of things, recognize patterns in language and social/emotional areas, develop fine motor coordination...she made some developmental gains along the way, only to have them lost later...No speech anymore, crippling OCD and associated anxiety. We hopefully will be getting IVIG soon and I hope that we'll be able to redevelop some function once the chaos is reduced.

thank you... I live in alpharetta ga... i can't find an immunologist either..not one listed on ped's list and if i found one they may have said i need a referral..i hesitate to call my "not widely accepted ped can i give mortin everyday and for how long can i continue Called for cunningham test no response yet...maybe they are off today. called dr L this moring have an appoint november 20...receptionist seemed a liitlte put off...i asked her about why a little put offish...she was nice don't get me wrong but sort of implied maybe Dr L a little overPandas/or its taking too much of her time from other neuro stuff ie seizures For some reason, doctors of osteopathy (DOs) seem more willing to think outside the box and investigate health problems. This can help you find one in your area. http://www.osteopathic.org/index.cfm?PageID=findado_main Also, you might have better luck emailing Dr. Cunningham. Her lab has been VERY good about getting back to me quickly whenever I've emailed. I have found that the best bet in finding a pediatrician who will "think outside the box" is look for a DO-doctor of osteopathy. This may help:

I emailed her and she arranged to send me the kit for the blood draw.

I think your instincts are spot on! How much learning vs frustration(and sense of failure) do you think your son is getting at school. Bad enough you have to fight so hard to get proper treatment for your child, shouldn't have to fight the school, or risk compromising his health because they've decided to cast a wide net to catch those few parents that do not do a good job of keeping their kids in school.

My daughter was tested a couple years ago-negative.

Shaesmom, I wonder, then, if you may have had an immune deficiency as a child, undiagnosed of course. I was actually sick alot as a child, seldom saw the doctor, though- we were so poor and those were the days when moms just nursed their kids through illness, unless it was an emergency situation. But, as an adult, even my 1st few years of teaching(which is supposed to be the worse time for teachers because of exposure to all those kids' germs) I seldom get ill, and when I do, its easily overcome just managing symptoms. So, I think all those illnesses (colds and stuff mostly) when I was a child gave me a large and diverse immune memory. Vickie, My daughter has been dealing with PANDAS since she was a toddler, it disrupted her development since early childhood. We didn't make the strep connection until she was 10...nobody had ever checked for strep back when she actually had symptoms. (I can actually understand that, they thought if they were going to treat w/ abx anyway, why put her though the swab since it wouldn't change course of treatment) and when she got sick again after abx treatment, they decided it must be allergies. Actually once she was dx'd autistic, I think there was a doctor bias there that kept her from getting the kind of medical attention normal kids would get in the same situation...but that's a whole other topic. So, I don't think her being a teenager in these circumstances is improving her hygiene- But I'm thinking this is an immune system issue, more than a hygiene issue. If a child's immune system is working properly, it is finding pathogens and developing antibodies before an infection happens- they don't get actual infections with every pathogen they are exposed to. So, they build immune memory (stored copies of antigens) to things that didn't actually make them sick. That's the idea behind vaccines-build memory by exposure to antigens that are disabled or too weak to cause illness. (Another whole other topic!) So, I guess what I'm actually asking here is are there implications for how well (or not) my daughter is building immune memory so that she will "grow out" (or not) of this chronic strep situation?

Thank you LLM, I do need to look at those...I was completely going on what I'd heard from Swedo. I have to remember that she was working with some very distinct cases (hand picked for clarity), and there was probably less variability in her results because of that. She did have a case of PEX who needed a "do over" as well.

So last night, just for fun (is this what its come to?), I went looking for information on GABHS. I read that the reason adults have less problems with strep is because they've been exposed to most strains during childhood and have acquired immunity. Well, that just makes so much sense, I wonder why I never thought of that? Anyway, I, of course, began to consider what are the implications for my daughter, who doesn't seem to be building any immunity to GABHS. She's 15 now....Will she be having problems with this into adulthood?

It seems like a reasonable request to me. My doctor called Dr. Latimer without my ever having seen her or having consulted her...she returned his call the same day. Would your doctor be willing to call her? I don't know if that would work better, but seems like its worth a shot.

I think with Mady Hornig's mouse model, they gave the BBB weakened mice antibodies from mice who had produced an immune response to GABHS (antibodies to GABHS). This was how she demonstrated that the reaction was due to the antibodies and not the GABHS...The PANDAS mice didn't have GABHS, only the antibodies. Susan Swedo said at one of her DAN conference lectures, that she thinks the difference is that PEX gets quicker results because it actually filters out, removes the offending antibodies, so sx's cease. With IVIG, she thinks the donor IgG recognizes the offending antibodies as foreign and destroys them...so it takes time for that to happen. But, your question makes me wonder about the nature of the IgGs in the IVIG...are they undifferentiated for antigens?