New Name Coming

[nevergiveup]

Dr. Don Gilbert gave a lecture today at the Lindner Center Of Hope. He is a leading TS doc and has trained and studied under Harvey Singer at Hopkins. He spent one hour today, giving technical and statistical justifications as to why PANDAS is an unjustified diagnosis and does not exist. He went through many research studies including Swedos, explaining how they were inconclusive and not sound enough to conclude PANDAS is real. He mentioned the fact that strep titers elevated do not necessarily mean a child has pandas. Which we already knew on thus forum long before he did (Dr Gilbert). Ok so he ends the lecture with "New information is coming though". Ok. Semantics..... If our children have an autoimmune disease, treat with immune modulators. I am thrilled and excited as to what the future holds for our children once this new info is released. The docs are still a little stuck on how to identify these kids with the autoimmune varient TS versus other TS. I am praying Gilbert will take a leap of faith and best judgement, based off of a child's medical history of "infection triggered reactions" and treat. There is NO confirmed test to diagnose MS either, yet it is treated all the time. If he listens clearly to the parents he will be able to distinguish these kids. Hopefully the new research coming is getting strong enough that the "do no harm" has turned to "not treating is harmful".

[thereishope]

You know how I feel about that man. He said one thing behind closed doors and he says another thing in public. If you are going to be a naysayer of PANDAS, then at least be consistent about it!

Edited August 10, 2010 by Vickie

[nevergiveup]

Vicki, Its the ending of the PANDAS controversy, but the beginning of treatment for our children. Cannot have a new name disease unless the old named disease never existed. See the new disease will have legitimate backing and be more accepted and less contoversial. Plus my guess is Strep will not be a part of the new name, rather infectious triggers like; strep, myco, H1N1 will be part of diagnosis. I think the whole strep thing, confused docs, but it never confused the parents. Semantics. It has been a long road and rather disappointing, I agree Vicki!

[thereishope]

Yes, it's the beginning of what can be a lot of good things for our kids, but the fact that he can walk away from this and technically say "I told you so" drives me up the wall. I agree, the new name will not have strep in it.

[Joan Pandas Mom]

My son's PANDAS diagnosis was ? by pedi 6 years ago this September. It was dismissed by quite a few dr's since, including Boston Children's ER and followup with Neuro associated with BCH. My son had a physical 3 weeks ago with pedi. We saw his pedi about 4 months ago and I thought his pedi told me about another PANDAS patient in the same group of pedis and I asked him how that patient was doing today. He said it was another dr's in the group's patient and he thinks the patient is fine now. I asked how that patient was treated. He answered with monthly penicillin shots. Had my son been treated by the same pedi instead of referred out to a neuro, we probably wouldn't be here right now. How do these doctors say it doesn't exist when kids are getting better? Do they believe in Syndenham's Chorea? ARGHHHHH

[Iowadawn]

My guess is the "big" docs will save face by sending out their "littler" docs to address this change. I have been told the naysayers were put in their place and were offered a means of saving face before the docs went fwd and potentially left them w/ egg on their face in the future-- Change the name. In an earlier post it was mentioned that Dr. K said that strep, virus, myco,etc. different triggers for the same set of symptoms. In that post he mentioned Pediatric Autoimmune Neuropsychiatric Complex. MY hunch is that this is the name. Just a hunch. Sept The Lancet for the white paper I have been told.

[thereishope]

Boy, everyone has these "insider scoops" but me!!!!!

[JAG10]

They can call it sh*t on toast if I don't have to feel like I "scored" every time I leave the pharmacy with abx!!!!!!!!!

 

I got them for both girls, BTW. Yea!! Now I can go on vacation!!!!

[EAMom]

They can call it sh*t on toast if I don't have to feel like I "scored" every time I leave the pharmacy with abx!!!!!!!!!

 

LOL

[cobbiemommy]

They can call it sh*t on toast if I don't have to feel like I "scored" every time I leave the pharmacy with abx!!!!!!!!!

 

I got them for both girls, BTW. Yea!! Now I can go on vacation!!!!

AMEN!!

[Joan Pandas Mom]

Got a great laugh out of that. How true!

[justinekno]

Love it!

 

They can call it sh*t on toast if I don't have to feel like I "scored" every time I leave the pharmacy with abx!!!!!!!!!

 

Edited August 10, 2010 by justinekno

[nevergiveup]

Joan Pandas Mom, My father is a physician and he attended the last appt with our Pandas expert doc for my dd. He was very interested in the white paper and this illness, he wanted to understand where it came from and what swayed the medical community. Our pandas doc said that it was other doctors children whom suffered from Pandas whom finally help sway this disease and their efforts to show that this is infectious triggered and autoimmune. My father liked that answer. I can only imagine what was going through his head..."Ah if other docs see this then it must be true". Not even his own daughter but other docs with kids with pandas. Yes doc kids get different treatments, I know, I am a docs kid. I always felt very comfortable will all of my medical care. Harsh reality, set in when I couldn'legitimize my dd's illness. I would bet all my money that Buster, myself, sfmom, and kimballot, tmom, oh and many more have even more to offer than the average suburbian doctor of random specialty in this illness. We could easily diagnose it, long before most pediatricians. Sorry to all u doctors out there, but everyone knows a mothers(fathers) gut instinct is far more powerful. Maybe we need to go to med school?

[peglem]

They can call it sh*t on toast if I don't have to feel like I "scored" every time I leave the pharmacy with abx!!!!!!!!!

 

I got them for both girls, BTW. Yea!! Now I can go on vacation!!!!

When we saw the rheumy in 2006 he said it couldn't be PANDAS because its really rare and her ASO titers aren't elevated. I told him almost that same thing- "I don't care whether you call it PANDAS or not- we know it gets better w/ abx." He prescribed 6 months worth of PennVK- too weak, and didn't help.

[nevergiveup]

Iowadawn, that name sucks!!!! Now our kids just have that crazy complex. Many autoimmune diseases cause neuropsychiatric symptoms but its not in the name, LUPUS, Hashimotos, MS. Please how can our children be stereotyped with the crazy complex. Nice now our kids have tics and a crazy complex. I hate this name and it will limit funding opportunities!