nevergiveup Posted September 30, 2010 Report Share Posted September 30, 2010 Tenacity, your story of your struggle to find care mirrors mine. I just know there are docs out there that treat with ivig and pex. More than we realize. Many on this forum do not publish their docs names. Link to comment Share on other sites More sharing options...
Tenacity Posted September 30, 2010 Report Share Posted September 30, 2010 Tenacity, your story of your struggle to find care mirrors mine. I just know there are docs out there that treat with ivig and pex. More than we realize. Many on this forum do not publish their docs names. Thank You! I believe you, and thank your for your encouragement. We're all walking a tight rope. I want to help anyone I can, but, I agree, I can never pass along a doctor's name, without his or her explicit permission. It's a crazy, complex, unfair world!... Tenacity Link to comment Share on other sites More sharing options...
JAG10 Posted October 1, 2010 Report Share Posted October 1, 2010 This thread is depressing. What's happening to us? Some have the secret and some don't? Is this the same group that voted faithfully for 2 months to earn a penny for the Grand Canyon sized research that is really needed? To find out we are really all dealing with the B team and the A team is a big secret you have to stumble upon? I live in the world of CHOP. Every doc in a 90 mile radius bows and curtsies at the alter of CHOP around here....so, if CHOP won't treat your kid, you're SOL or SOT. CHOP said PANDAS for my kid, but she had had it too long, so sorry-here..have some more psych meds that don't work. You think they'll call soon and tell me they've changed course???? This group think was all I had as an alternative to CHOP's conclusion and my kid is significantly better than she was 1 year ago because of it and what I learned; not perfect by any measure, but better. Hopefully more of these top docs will soon find it fashionable to sport their expertise and my child can get a head to toe immunological makeover at one of the nation's leading children's hospitals right in my own backyard. Link to comment Share on other sites More sharing options...
P_Mom Posted October 1, 2010 Report Share Posted October 1, 2010 (edited) Children's Hospital of Pittsburgh was also a complete waste of time. Not a single doc in the establishment would take my boys on...."we don't believe in PANDAS." You have all heard it before. They are even actually conducting a PANDAS study at the hospital....image my relief and excitement to hear that!! Well, after several phone calls......the nurse woking with the doctor running the "study" let it slip that the doc doesn't really believe in PANDAS and is running the study to disprove it!! I offered to go down and talk to the doc....provide stacks of research, etc. Nope, not interested. I was told if a child had an onset of tics or OCD and they came to the study...they did a throat culture, or, maybe it was just swab, if negative....no PANDAS....bye, bye kid. I am not even sure what this thread is disagreeing on!? The 4 docs who are qualified to treat PANDAS? Anyway, the fact that I couldn't find a doctor anywhere in Southwestern PA who had a clue about PANDAS leads me to believe, no, know, that this disorder has a long way to go. (unfortunately) Edited October 1, 2010 by P.Mom Link to comment Share on other sites More sharing options...
norcalmom Posted October 1, 2010 Report Share Posted October 1, 2010 I'm not sure either. the nice guy that started this thread (and offered to put me up at his house so we could see Dr L!) said that she mentioned that there are only 4 doctors in the world she considers qualified to treat pandas. And some of us are interested in who she considers those to be. Don't know why its controvertial. We live near Standford. No body's interested there - they all have their own research projects going on I guess. There is one phychiatrist (who I got from someone on this site - who shared their doctor with me) did help us. Her area of expertise is OCD, she has a practice and is a professor at Standford as well. She's not an expert, but a beleiver, and was at the NIMH meeting. She has about 30 pandas patients. I don't beleive there is a secret society (I hope not!) but I may have started that with a somewhat sarcastic remark, a joke I thought, that was taken too seriously. Sorry if I offended you nevergiveup. Really, I'm not a bully, I'm just trying to find out where to take my son. Link to comment Share on other sites More sharing options...
nevergiveup Posted October 1, 2010 Report Share Posted October 1, 2010 Ok who was the mom, phila... was told by CHOP PEX was required. I believe it was about 3 weeks ago. I could go on and on like this... Remember the mom from new orleans last fall who's son got H1N1 and had pandas and went to to the ER and was admitted and given ivig for ocd and chorea. Ok and the same docs that said my dd was not severe enough to have ivig, showed me videos of the kids that are allowed intervention of ivig at our childrens hospital five years ago! They just offered my neighbor ivig, for his brand new diagnosed pandas son last week. Pandas is what he was diagnosed with. He is not as severe as most, but was offered. The same doc that offered it up doesn't believe in pandas. Clearly, the new name will reflect what they do believe in, but it ain't pandas. Link to comment Share on other sites More sharing options...
EAMom Posted October 1, 2010 Report Share Posted October 1, 2010 Ok who was the mom, phila... was told by CHOP PEX was required. I believe it was about 3 weeks ago. I could go on and on like this... Remember the mom from new orleans last fall who's son got H1N1 and had pandas and went to to the ER and was admitted and given ivig for ocd and chorea. Ok and the same docs that said my dd was not severe enough to have ivig, showed me videos of the kids that are allowed intervention of ivig at our childrens hospital five years ago! They just offered my neighbor ivig, for his brand new diagnosed pandas son last week. Pandas is what he was diagnosed with. He is not as severe as most, but was offered. The same doc that offered it up doesn't believe in pandas. Clearly, the new name will reflect what they do believe in, but it ain't pandas. I'm confused. So, CHOP does treat with PEX and IVIG but only if your child falls under their mysterious definition of "severe enough" (thus "allowed intervention"), otherwise you'll be turned away (sometimes even without being seen), laughed at, and told PANDAS doesn't exist...and now they are treating your neighbor's child (who isn't even that severe) with IVIG, diagnosed with PANDAS (even though the doc who is treating doesn't believe in PANDAS?). It sounds like a pretty inhumane game they are playing with these kids and families...if these are the type of docs that are "qualified to treat" I'm not sure I want to see them. Link to comment Share on other sites More sharing options...
JAG10 Posted October 1, 2010 Report Share Posted October 1, 2010 (edited) CHOP-PEX only if severe enough, sudden enough and brand spanking new diagnosis (I was told within weeks of onset)......of course, who knows how you pull THAT off since it takes 9-12 months to get an appt with their psych pandas "expert" No IVIG that I've heard of there. And, forgive me, but CHOP just isn't a good acronym for any hospital, is it?? One more beef and I'll zip it.... Dr. E is supposed to be the PANDAS expert at CHOP, back in Jan 2010 when I suggested we have my dd participate in Dr. Cunningham's study, she didn't know what that was. Is she CHOP's major player or are you referring to other neuro docs who would never be publically associated with PANDAS? Edited October 1, 2010 by JAG10 Link to comment Share on other sites More sharing options...
nevergiveup Posted October 1, 2010 Report Share Posted October 1, 2010 It got controversial becuz I suggested that it may be short sited of us to assume she was referring our major 4 docs on the forum. She used the word qualified, and let's face it she is a neurologist. Who really knows, but I think there is a whole lot of stuff we really aren't privy to, even though we think we know so much. (We do know a lot thoughn but b cells, C4's Antidop antibodies, how ivig works, the brain and the immune system, its very complicated!) Link to comment Share on other sites More sharing options...
nevergiveup Posted October 1, 2010 Report Share Posted October 1, 2010 CHOP may sound like a funny name, but the clout and prestige it holds nationally for children's medical care is impressive. Yep, that's my fear of the white paper, that unless kids are caught at intial onset, immune modulating interventions will be denied due to lack of success. Link to comment Share on other sites More sharing options...
nevergiveup Posted October 1, 2010 Report Share Posted October 1, 2010 I heard Dr E was at the mtg. In Jan. didn't know Cunningham tests, rather strange. The study on the antidop antibodies wasn't published yet, but I saw a rheumotologist that not only knew study in February, had new data on antidop antibodies and the control. He knew all about it and it wasn't yet published. And he was a non believer somewhat. Dr E had to have it, Dr. Murphy, in florida knew for sure. Weird..... Link to comment Share on other sites More sharing options...
JAG10 Posted October 1, 2010 Report Share Posted October 1, 2010 I heard Dr E was at the mtg. In Jan. didn't know Cunningham tests, rather strange. The study on the antidop antibodies wasn't published yet, but I saw a rheumotologist that not only knew study in February, had new data on antidop antibodies and the control. He knew all about it and it wasn't yet published. And he was a non believer somewhat. Dr E had to have it, Dr. Murphy, in florida knew for sure. Weird..... IDK, maybe she played dumb. I kind of doubt it because she seemed suspicious of an authentic research study you had to pay to participate in, she said real research isn't run that way..... Link to comment Share on other sites More sharing options...
nevergiveup Posted October 1, 2010 Report Share Posted October 1, 2010 Eamom, Chop treats with ssri and anti tic meds and in severe sudden onset with pex. No games. Why would you talk that way about them, they are no different than any other doc. Your doc doesn't treat every child with ivig does he??? Is he inhumane? CHOP does not do ivig for pandas but does for a SC diagnosis. Why are you so critical of this type of treatment. Its better than in most places where you get nothing. Link to comment Share on other sites More sharing options...
philamom Posted October 1, 2010 Report Share Posted October 1, 2010 (edited) Yes, same here with CHOP. Was told (by Psychiatrist) my daughter had PANDAS but PEX was the only treatment recommended and it was reserved for the severe cases. This was in 2009. Our history at CHOP (from age 2): waited 3 months to see ENT-recommends Immuniologist, waited 3-4 months to see Immuniologist- recommends Neurologist, waited 3-4 months to see Neurologist- recommends Psychiatrist, waited 3-4 months to see Psychiatrist- recommends Neurologist, waited 3-4 months to see another Neurologist- recommends a Psychologist: Psychologist tells us about PANDAS and diagnosis my daughter(2007)= Say's "It's a shame she wasn't treated in the beginning!" The psychologist WAS NOT from CHOP. Edited October 1, 2010 by philamom Link to comment Share on other sites More sharing options...
EAMom Posted October 1, 2010 Report Share Posted October 1, 2010 I heard Dr E was at the mtg. In Jan. didn't know Cunningham tests, rather strange. It doesn't seem strange to me. Link to comment Share on other sites More sharing options...
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