International OCD Foundation Website

[mama2alex]

Not sure when they posted this, but they now have a PANDAS Fact Sheet:

 

http://www.ocfoundation.org/childOCD.aspx - click on "Dowload PANDAS Fact Sheet"

 

Haven't read through it yet, but wanted to let everyone know, since some here had emailed them to request this. I'll be interested in everyone's opinions.

[mama2alex]

I read through it and the most glaring omission is IVIG and Plasmapheresis as potential treatments. They only mention antibiotics (along with SSRI's and CBT).

 

Also I noticed at the bottom under "More Information" they only have the following:

 

The PANDAS Foundation http://www.pandasfoundation.org

Author: Evelyn Stewart, MD, Massachusetts General Hospital

 

No other resources are listed.

[EAMom]

Interesting ommission.

 

Yes...no mention of immunomodulatory tx (steroids, plasmapheresis, IVIG). They also don't use the word "autoimmune", except where they state what the "A" in PANDAS stands for. They use the words "immune reaction" over and over instead.

 

This is written by someone from Mass Gen...which is the hosp. associated with Beth Maloney's Pandas Foundation. I wonder if that has something to do with it since Beth seems quite anti- IVIG and anti - plasmapheresis.

[Joan Pandas Mom]

I didn't know Mass Gen. was affiliated with the PANDAS Foundation. I took my S to one of the Dr.'s affiliated with Mass Gen for his last exacerbation in October. I took him to that Dr. back in 2005, before I knew for sure it was PANDAS. Back in 2005 he did recommend that we check his titers again in times of exacerbation. Which we did, they were elevated twice, but I was told not high enough to warrant an antibiotic. I know it is PANDAS now. Anyway, knowing it was PANDAS this October, he suggest stayin gon the abx for 6 weeks and prescribed Prozac and Risperdol. We have not been back. It was very expensive and the Dr. didn't seem interested in treating PANDAS.

[thereishope]

Mass General is noted as the recipient of all donations given to the PANDAS Foundation on the website. Dr Geller is based there.

[colleenrn]

I am also surprised they omitted IVIG, PEX, and steroids. Not really the complete picture.

 

Colleen

[mama2alex]

Dr. Geller at Mass General is on the Scientific Advisory Board of the PANDAS Foundation. Here's a list of the board members from the article Dr. T sent out earlier:

 

Dr. Daniel Geller, founder and director of the Pediatric and OCD Clinic at Massachusetts General Hospital;

Dr. Tanya Murphy, known as one of the top PANDAS researchers in the nation and Director of the Rothman Center for Pediatric Neuropsychiatry at the University of South Florida;

Dr. Kevin Price, general surgeon at Southern Maine Medical Center who came on board to ignite inclusion of PANDAS study in medical schools (he said it was a topic he did not study in school);

Dr. Catherine Nicolaides, who initially diagnosed and treated Sammy.

 

The doctor who wrote the fact sheet on the IOCDF website is in the Department of Psychiatry with Dr. Geller.

[reactive]

Not sure when they posted this, but they now have a PANDAS Fact Sheet:

 

http://www.ocfoundation.org/childOCD.aspx - click on "Dowload PANDAS Fact Sheet"

 

Haven't read through it yet, but wanted to let everyone know, since some here had emailed them to request this. I'll be interested in everyone's opinions.

OK...I feel like I need to comment here and I do not want to offend ANYONE BUT...

If there is no ICD9 code for PANDAS yet and therefore it is not a "real" and recognized clinical entity YET...and I know my ds9 is PANDAS (or PITANDS?) and I personally know it exists...however...

 

I have a problem with a large setting such as this hospital (Mass Gen) and/or other organizations making a "foundation" for something that cannot be coded as a real diagnosis yet and the research is not all in...and collecting money for same...heck until January when I found this forum I had no idea of the complex workings of PANDAS (a la Buster). To me this is more than "strep-abnormal symptoms-get on daily antibiotics and you are cured....

 

Everyone is desperate and wants to get the word out...and per Diana P it sounds like there has been loads of progress...but to me this PANDAS foundation seems like the cart before the horse. MY OPINION only...

 

My husband tells me I can get hot headed...sorry everyone...

[thereishope]

Did you read my thread about the new DSM-5 being in production? the DSM-4 was published I believe in the early to mid 90's, even prior to Swedo's landmark paper. Currently, they are revising the DSM 4 and omitting, changing, and adding new things. I see this as an opportunity to try to get PANDAS into an official, let's say...handbook for doctors. if it is listed in it, it will get a diagnostic code and officially be recognized.

 

Yes, it is a book on mental disorders. But when PANDAS surfaces, it is (my opinion) a temp mental disorder. God knows when the next DSM will be in production. The DSM 5 isn't even scheduled to be out until 2013!

[LNN]

Dr. Stewart is on the science advisory board of the OC Foundation. She is not associated with PANDAS Foundation nor did PF have anything to do with the OC Foundation PANDAS fact sheet.

 

Dr Stewart consulted with some parents of PANDAS kids (including some who are latitudes members), who provided her with research studies and information. It went thru 8-9 editing versions. The parents who worked with Dr Stewart were disappointed some things didn't make it into the final version, but they fought hard to make it better than the NIMH page and at least got antibiotics and a discussion of titers on there. Anyone who's ever written a "group" paper knows how hard it can be to get everyone to agree on what goes in and what doesn't, especially on something "controversial". I'm happy about what did get in - it says after the initial episode, other non-strep infections can be a trigger and that in some cases prophylactic antibiotics may be needed - something NIMH won't say even with Swedo as a director. Plus it says be careful about SSRIs. For a psychiatrist using OCF as an "authority" - this is a good thing. Most probably have no clue that PANDAS kids can react differently on SSRIs.

 

Do I wish it said more - absolutely. But I don't think OCF is looking to be the authority on PANDAS. They're trying to educate parents who've gone to their site thinking their kid suddenly has OCD so that the parents at least hear the word PANDAS and get some idea of what to research. In their defense, for all it doesn't say about PANDAS, it says a whole lot more than the PANDAS Foundation site does.

[kimballot]

Dr. Stewart is on the science advisory board of the OC Foundation. She is not associated with PANDAS Foundation nor did PF have anything to do with the OC Foundation PANDAS fact sheet.

 

Dr Stewart consulted with some parents of PANDAS kids (including some who are latitudes members), who provided her with research studies and information. It went thru 8-9 editing versions. The parents who worked with Dr Stewart were disappointed some things didn't make it into the final version, but they fought hard to make it better than the NIMH page and at least got antibiotics and a discussion of titers on there. Anyone who's ever written a "group" paper knows how hard it can be to get everyone to agree on what goes in and what doesn't, especially on something "controversial". I'm happy about what did get in - it says after the initial episode, other non-strep infections can be a trigger and that in some cases prophylactic antibiotics may be needed - something NIMH won't say even with Swedo as a director. Plus it says be careful about SSRIs. For a psychiatrist using OCF as an "authority" - this is a good thing. Most probably have no clue that PANDAS kids can react differently on SSRIs.

 

Do I wish it said more - absolutely. But I don't think OCF is looking to be the authority on PANDAS. They're trying to educate parents who've gone to their site thinking their kid suddenly has OCD so that the parents at least hear the word PANDAS and get some idea of what to research. In their defense, for all it doesn't say about PANDAS, it says a whole lot more than the PANDAS Foundation site does.

 

I agree - This paper is a step in the right direction. Just being able to bring this in to school to give to the teachers each year will be a great benefit. In general, Fact sheets contain some bare-bones information to help the lay person to understand a condition. True - more could be added- but that is why the author is identified.. so that constructive suggestions could be made for future updates.

[Joan Pandas Mom]

Why aren't Dr's T, L and K on this list? From what I have been reading here, from PANDAS parents, is that Dr.'s T., L., and K are the most experienced, knowledgeable, educated in this area.

 

Dr. Geller at Mass General is on the Scientific Advisory Board of the PANDAS Foundation. Here's a list of the board members from the article Dr. T sent out earlier:

 

Dr. Daniel Geller, founder and director of the Pediatric and OCD Clinic at Massachusetts General Hospital;

Dr. Tanya Murphy, known as one of the top PANDAS researchers in the nation and Director of the Rothman Center for Pediatric Neuropsychiatry at the University of South Florida;

Dr. Kevin Price, general surgeon at Southern Maine Medical Center who came on board to ignite inclusion of PANDAS study in medical schools (he said it was a topic he did not study in school);

Dr. Catherine Nicolaides, who initially diagnosed and treated Sammy.

 

The doctor who wrote the fact sheet on the IOCDF website is in the Department of Psychiatry with Dr. Geller.

[T_Mom]

Joan--

Just like there are pockets of expertise around the world on autism, there are different pockets of expertise on Pandas issues--and we each only know the ones we have seen.

 

The listed Board members are well respected in their work and most likely known by the founders of the Board. I would guess that any of us have (hopefully) a small list of people that we might invite to be on a Board and I strongly doubt we would all agree!--for one reason or another.

 

I am thrilled that Pandas is "more out there" then it was two years ago--but we have a LONG way to go folks.

The more it is in the news, in the public eye--the more we are willing to put it out there--to tell, share, be honest about our experiences, the more likely it may, just may, gain the attention it so deserves. There are a handful of people who have been "out there" helping others and pushing Pandas into the face of the public eye, as well as putting it in front of doctors time and again--I applaud each and every one of them, as I am sure you do too--

 

Let me add--this new Fact Sheet on the IOCF website is FAR from comprehensive, and I believe it to be downright misleading on some VERY important points which have already been established in the research.

 

Having said that--I can only hope we each might take the time to write the Director of IOCF then and complain directly to him. Thanks for bringing it to our attention.

[Buster]

If there is no ICD9 code for PANDAS yet and therefore it is not a "real" and recognized clinical entity YET...and I know my ds9 is PANDAS (or PITANDS?) and I personally know it exists...however...

 

I know you are saying that there isn't a specific separate code for PANDAS -- but that's because there is still debate about whether PANDAS is a set of symptoms or a disease.

 

As a set of symptoms, PANDAS has a bunch of codes. For example, children with PANDAS have either a tic disorder (307.20 : Tic disorder unspecified) or OCD (300.3). The problem is not characterizing the symptoms, but rather coding the symptoms in such a way that the treatment is actually beneficial and covered under the code.

 

Doctors (and insurance) associate standards of care with each code. Thus you can get strong anti-psychotics for 300.3 but can't usually get antibiotics. This in essense is the debate in PANDAS -- not whether the kids are sick, but whether the code used to describe their symptoms has good evidence (i.e., double-blinded studies) of efficacy.

 

Unfortunately, the "standard of care" is usually based on research from 15-20 years ago and despite the very strong set of papers from Yaddanpudi (2009), Kirvan (2004, 2006, 2007), Cunningham(2006, 2007), Perlmutter (1999), Church (2004), ... the studies have not been replicated sufficiently to have a proven set of results. A simple repeat of Perlmutter would do wonders. For reasons I can't figure out the Turkish and Russian studies don't seem to count.

 

Tourette's Syndrome, for example, is not a disease (because its cause is not known). It is defined by a set of symptoms. OCD is a syndrome because its cause isn't known. Most believe that the basal ganglia is involved in OCD and Tourettes, but exactly what is wrong and what will help correct the disorder is not known.

 

 

In terms of treatment options, PANDAS can be characterized by ICD9

 

348.39 Other encephalopathy -- if you have evidence of inflammation of the brain

279.00 Hypogammaglobulinemia unspecified -- some children have unusual IgG levels

279.03 Other selective immunoglobulin deficiencies -- again if they aren't raising a IgG response

279.09 Other deficiency of humoral immunity -- again because of the faulty antibody creation

279.10 Immunodeficiency with predominant t-cell defect unspecified -- again because of the high T-cell recruitment

 

or the old standby 279.3 Unspecified immunity deficiency

or better yet 279.4 Autoimmune disease not elsewhere classified

 

 

Thus far Kirvan and Cunninham tests established anti-GM1 antibodies. Swedo/Perlmutter demonstrated that IVIG and PEX had dramatic improvement on severe cases that had sudden onset. Swedo also demonstrated that IVIG and PEX had no effect on children who did not fit the PANDAS subgroup. While this is strong evidence, what is actually required is for Swedo's tests to be repeated and confirmed.

 

Anyway, I know your point which is that PANDAS doesn't have it's own code, but thought I'd lay out all the codes that apply so that folks know it is codeable.

 

Buster

[Buster]

It appears PANDAS is not in the current draft of DSM-5 either.

 

Did you read my thread about the new DSM-5 being in production? the DSM-4 was published I believe in the early to mid 90's, even prior to Swedo's landmark paper. Currently, they are revising the DSM 4 and omitting, changing, and adding new things. I see this as an opportunity to try to get PANDAS into an official, let's say...handbook for doctors. if it is listed in it, it will get a diagnostic code and officially be recognized.

 

Yes, it is a book on mental disorders. But when PANDAS surfaces, it is (my opinion) a temp mental disorder. God knows when the next DSM will be in production. The DSM 5 isn't even scheduled to be out until 2013!