New Name Coming

[JAG10]

PAN complex begs to be twisted into Peter PAN complex...... I guess not that far off considering all the behavioral regression!!

[nevergiveup]

JAG10, if the disease is not about strep, like sydenhams chorea, does that mean abx is not warranted??? I hope abx is still a first treatment option. quote name='JAG10' date='10 August 2010 - 04:53 PM' timestamp='1281477195' post='79181']

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!!!!

[thereishope]

JAG...I was thinking they may add an "i" in there and coin it PANIC. Don't like that....

[Betty04]

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!!!!

 

 

Thanks for the laugh! I thought I was the only one shaking at the pharmacy counter until I got my next antibiotic "fix."

[Kay]

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!!!!

 

 

 

Enjoy your vacation!!!! We are still laughing here! I think we all feel like that.

[kimballot]

Look... we've been posting over and over that strep is certainly a problem, but it is not the ONLY problem. Now the science has caught up with us. I agree that Sh** on toast would be a fine name and I think we should all start referring to this disorder as SOT complex.

 

We know that the fact is that Singer and Kurlan and such were the ones who were off. Let's face it... they've spent their time trying to say that the disorder does not exist because it can be linked to things other than strep. We've been saying... "yes...yes... the disorder DOES exist AND it can be linked to things other than strep".

 

I, personally, cannot wait to bring the white paper to the docs who spent years telling us that my son's problems could not be related to his sinus infections because there were no elevated titers. I am trying to think of the best way to deliver it... by hand?...via US postal mail?... email?.. maybe all 3.

 

I will be eagerly awaiting the September Lancet!

[Iowadawn]

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!

 

 

I have never HEARD this name from Dr. K or anyone else in the know. That name was mentioned in a post that talked about the OCD conference. I don't like the sound of a "complex", either. PITAND actually fits the best if they have come to the conclusion "it ain't just strep". Doubt that they will keep this one. Dawn

[JAG10]

Look... we've been posting over and over that strep is certainly a problem, but it is not the ONLY problem. Now the science has caught up with us. I agree that Sh** on toast would be a fine name and I think we should all start referring to this disorder as SOT complex.

 

We know that the fact is that Singer and Kurlan and such were the ones who were off. Let's face it... they've spent their time trying to say that the disorder does not exist because it can be linked to things other than strep. We've been saying... "yes...yes... the disorder DOES exist AND it can be linked to things other than strep".

 

I, personally, cannot wait to bring the white paper to the docs who spent years telling us that my son's problems could not be related to his sinus infections because there were no elevated titers. I am trying to think of the best way to deliver it... by hand?...via US postal mail?... email?.. maybe all 3.

 

I will be eagerly awaiting the September Lancet!

 

Ahhh...but will SOT make the DSM-5 in 2013.........

[nevergiveup]

Guys, I would rather call it SOT, than the Kid Crazy Complex. Our kids struggle enough without the schools and teachers thinking they have a neuropsychiatric COMPLEX. Why can't they have a legitimate autoimmune disease rather than a complex? What is a complex anyway, versus a syndrome vs a disorder vs a disease? Are these technical terms? When someone has a complex, it doesn't quite give the best impression. So I vote for SOT, also, even though we don't get a say in it. I guess now any kid with crazy behavior could have the "kid crazy complex". This sure is going to make life more difficult for the shrinks.

[T_Mom]

Nevergiveup--do you know if the session by Dr Gilbert was recorded?

 

What is your sense of what Gilbert was really saying in the presentation? Is it that he does not believe in the autoimmune reaction component to Pandas? -- or is it that he does not believe in it being strep-based alone? -- or was it he just does not believe in kids with OCD/tics getting better on antibiotics???

 

The FACT that our kids have had relief from neuropsychiatric disorders from the effects of antibiotics, steroids, IVIG, pheresis--well...

that phenomena convinces you--I shudder to think of all those kids that go untreated.

Edited August 11, 2010 by T.Mom

[tpotter]

My son just responded (to Kimballot's "SOT Complex"), "And the 'toast' is my brain!

 

Kimballot wrote:

 

Look... we've been posting over and over that strep is certainly a problem, but it is not the ONLY problem. Now the science has caught up with us. I agree that Sh** on toast would be a fine name and I think we should all start referring to this disorder as SOT complex.

 

We know that the fact is that Singer and Kurlan and such were the ones who were off. Let's face it... they've spent their time trying to say that the disorder does not exist because it can be linked to things other than strep. We've been saying... "yes...yes... the disorder DOES exist AND it can be linked to things other than strep".

 

I, personally, cannot wait to bring the white paper to the docs who spent years telling us that my son's problems could not be related to his sinus infections because there were no elevated titers. I am trying to think of the best way to deliver it... by hand?...via US postal mail?... email?.. maybe all 3.

 

I will be eagerly awaiting the September Lancet!

0

[nevergiveup]

Gilbert went through different studies citing why he felt they were not sound. He mentioned Hopkins and studies done that had conflicting results. He left the impression that PANDAS has no creditable science behind it to date. He left the impression that docs cannot and should not treat PANDAS. I know he personally believes some TS is immune mediated, or could be. But he wants better science and better drug studies to justify treatment. In some ways he left the impression that the new info about to be published will further justify his stance that Pandas does not have credible science behind it. So I am very confused. I am just hoping this is not the case and it is really the white paper he is referring to. Not another Hopkins study showing how Pandas is not backed by science. I have to say I am confused as to the timing and content of this lecture. U can call UC at their Continuing Medical Education Dept to see if they have a DVD of his lecture. They have stuff on line its easy to find.

[EmersonAilidh]

Can someone please explain the difference between a "complex" & whatever P.A.N.D.A.S. is classified as? I would honestly be a fan of a new name. Lord knows everyone gets SO confused when I say that I have P.A.N.D.A.S.. They're just like "Wait. You can buy those???"

Also, is "pediatric" necessary since people like me & Emily Asher have obviously proven that it can extend beyond that age group? That's another source of confusion. Average person - "Pediatric? But you're fifteen." Me - "I... Don't know. I got it as a kid so it's pediatric, apparently."

 

 

 

 

Side note - HELLO EVERYONE! My email change finally went through after many days of refreshing my inbox repeatedly. Sorry for the absence.

[EAMom]

"Pediatric" confuses a lot of folks...b/c they don't understand the "pediatric" in PANDAS means pediatric ONSET, and that an adult can have PANDAS as long as the onset was in childhood.

 

BTW, the definition of "Pediatrics" (not re. PANDAS, but in general) technically includes infants, children, and adolescents.

Edited August 11, 2010 by EAMom

[peglem]

Can someone please explain the difference between a "complex" & whatever P.A.N.D.A.S. is classified as? I would honestly be a fan of a new name. Lord knows everyone gets SO confused when I say that I have P.A.N.D.A.S.. They're just like "Wait. You can buy those???"

Also, is "pediatric" necessary since people like me & Emily Asher have obviously proven that it can extend beyond that age group? That's another source of confusion. Average person - "Pediatric? But you're fifteen." Me - "I... Don't know. I got it as a kid so it's pediatric, apparently."

 

 

 

 

Side note - HELLO EVERYONE! My email change finally went through after many days of refreshing my inbox repeatedly. Sorry for the absence.

The pediatric part of the acronym refers to pediatric onset not to duration. But that has been a constant point of confusion. That doesn't rule out adult onset of infection triggered autoimmune neuropsychiatric disorders- just that this has been studied as as a pediatric issue and hasn't been studied in adults.