Beth Maloney on Good Day LA today...

[ajcire]

Susan, yes, I have the list from her and they are all on it.

 

 

 

 

 

Do we know if Dr. K, Dr. L, Dr. T, etc. are on her list of doctors?

 

Susan

[thereishope]

She sometimes posts her upcoming interviews on her facebook fan pages to promote them. She also has a new email list, but I'm not included on it.

[peglem]

How do we get the NIMH page updated? If I was an interviewer, I would see the NIMH as the ultimate authority and it would trump parental anecdotes.

[Buster]

How do we get the NIMH page updated? If I was an interviewer, I would see the NIMH as the ultimate authority and it would trump parental anecdotes.

That is a great question. I have sent emails to the webmaster at NIMH, have contacted various perceived owners of content, all without success. I tried calling one day and just gave up. If you find a way in, I'd sure be willing to provide a marked up copy of the NIMH website with corrections based on the current research.

 

Buster

[peglem]

Even if they would just put a disclaimer on there that further research is being done and that the info on that site reflects only preliminary research it would help.

[LNN]

How do we get the NIMH page updated? If I was an interviewer, I would see the NIMH as the ultimate authority and it would trump parental anecdotes.

That is a great question. I have sent emails to the webmaster at NIMH, have contacted various perceived owners of content, all without success. I tried calling one day and just gave up. If you find a way in, I'd sure be willing to provide a marked up copy of the NIMH website with corrections based on the current research.

 

Buster

 

Here's a list of communications people at NIMH

 

Volkov, Marina L Acting Director, Office of Science Policy, Planning and Communications email mv31o@nih.gov

Buckley, Diane Deputy Director, OSPPC email buckleyd@mail.nih.gov

Little, A. Roger PHD Sr. Policy Advisor for Sci. Coord. email alittle@mail.nih.gov

Stevenson, Maggie Program Coordinator NSC email mdahl@mail.nih.gov

Egan, Katharine D Chief, Science Writing, Press and Dissemination Branch email ke66j@nih.gov

 

 

I don't know if any of them would be the correct people, but if they all got enough emails, sent and sent again every few weeks, it might get the attention of the proper people. Squeaky wheels and all that. I really think that PANDAS does not get any funding because NIMH feels that no one cares. Everyone assumes that it's a rare disease. But there are 1.5-3 million kids with OCD. If only 1% of them have PANDAS, that's 150,000 kids. Toss is Tourettes, GAD and ADHD kids and it's pretty easy to make an argument that there's a difference between rare and rarely diagnosed.

 

Buster - do you have a particular message you've composed in your head that you'd like us to convey? Some references to recent studies, some key points that need to be addressed? It would be more effective if we all communicate roughly the same ideas.

[T_Mom]

You need to get to Dr Swedo or Dr Paul Grant -- both are there and both have been involved with Ps issues in the past.

[Megs_Mom]

How do we get the NIMH page updated? If I was an interviewer, I would see the NIMH as the ultimate authority and it would trump parental anecdotes.

That is a great question. I have sent emails to the webmaster at NIMH, have contacted various perceived owners of content, all without success. I tried calling one day and just gave up. If you find a way in, I'd sure be willing to provide a marked up copy of the NIMH website with corrections based on the current research.

 

Buster

 

Here's a list of communications people at NIMH

 

Volkov, Marina L Acting Director, Office of Science Policy, Planning and Communications email mv31o@nih.gov

Buckley, Diane Deputy Director, OSPPC email buckleyd@mail.nih.gov

Little, A. Roger PHD Sr. Policy Advisor for Sci. Coord. email alittle@mail.nih.gov

Stevenson, Maggie Program Coordinator NSC email mdahl@mail.nih.gov

Egan, Katharine D Chief, Science Writing, Press and Dissemination Branch email ke66j@nih.gov

 

 

I don't know if any of them would be the correct people, but if they all got enough emails, sent and sent again every few weeks, it might get the attention of the proper people. Squeaky wheels and all that. I really think that PANDAS does not get any funding because NIMH feels that no one cares. Everyone assumes that it's a rare disease. But there are 1.5-3 million kids with OCD. If only 1% of them have PANDAS, that's 150,000 kids. Toss is Tourettes, GAD and ADHD kids and it's pretty easy to make an argument that there's a difference between rare and rarely diagnosed.

 

Buster - do you have a particular message you've composed in your head that you'd like us to convey? Some references to recent studies, some key points that need to be addressed? It would be more effective if we all communicate roughly the same ideas.

Love your ideas Laura. Maybe you could ask us to all send an email to a different 2-3 people every week or two? So that we'd stay organized? Look forward to hearing Buster's thoughts on what to include. Do you want the first email to be our child's story? And then future emails to be topic/plea based? Look forward to hearing more.

[Buster]

Buster - do you have a particular message you've composed in your head that you'd like us to convey? Some references to recent studies, some key points that need to be addressed? It would be more effective if we all communicate roughly the same ideas.

 

Hi LLM,

 

There are so many things wrong with the NIMH website that I keep wanting to scrap it and rewrite it. Let me start with some simple changes I hope they can do and then I'll hit last the most damaging section (about treating PANDAS like non-PANDAS OCD/tics -- arggh!):

 

Symptom Description

The web site states that "children may also become moody, irritable or show concerns about separating from parents or loved ones. "

 

Unbelievable. Please just delete that line. This so understates what the symptoms really are. A 20+ change on a CYBOC scale is *not* being moody. I doubt anyone on this panel would claim that their child is just moody, a little irritable, .... Arrggghh.

 

Statement that NIMH believes that PANDAS is a variant of Rheumatic Fever

 

This whole section needs to be re-worked. NIMH actually believes that PANDAS is a variant of Sydenham Chorea and explicitly has studied that it is not a subset of RF.

 

Throat culture is sufficient to demonstrate Streptococcal infection

The web site needs to add a simple Q/A about throat cultures and say:

Q. Is a throat culture sufficient to demonstrate association with streptococcal infection?

A. Yes. The AMA treats a positive GABHS throat culture as demonstration of an infection and warrants treatment of the strep infection.

 

The site needs to drop the emphasis on ASO and add a statement about rule-outs

Q. Does a negative ASO titer rule out PANDAS?

A. No. A rising ASO titer can confirm a preceeding strep infection if no throat culture was available. A negative ASO titer could be due to many variables and one study found that 46% of culture positive children presented with a negative ASO titer.

 

Arrgh the section regarding "Q. What are the treatment options for children with PANDAS? "

This just must be fixed.

The Answer states that PANDAS should be treated like any other form of OCD or tic disorder. But there is no science to support that statement. None. There is actually science pointing the other way -- that PANDAS is a separate pathogenesis from non-PANDAS OCD and tics and thus has to be treated differently. It just makes absolutely no sense for NIMH to be recommending anti-psychotics for PANDAS children with NO studies and not recommending antibiotics, IVIG or PEX despite the studies of efficacy.

This MUST be changed.

 

Perhaps I'll post back here a version of the web site that we can discuss as I do agree that helping NIMH correct their website would really help. I appreciate the difficult situation they are in, but I sure wish they'd fund the research to end the debates rather than claiming "more research is needed". If it's needed, fund it. Grrrrr.

 

Buster

 

P.S. I'll find a way to make this into more concrete suggestions. It seems the best approach is to challenge the web site on facts. Give me a day to think about what to do here.... I too have been unbelievably frustrated by the website.

[peglem]

I appreciate your work on this, and will support the effort with emails...

 

Right now I feel unequipped to tell them anything except my own opinions...They need more than that, I need to be able to cite specific research. Thanks Buster, you're amazing!

[ajcire]

ack, just deleted my thoughts as I was just thinking out loud.

[Suzan]

Throat culture is sufficient to demonstrate Streptococcal infection

The web site needs to add a simple Q/A about throat cultures and say:

Q. Is a throat culture sufficient to demonstrate association with streptococcal infection?

A. Yes. The AMA treats a positive GABHS throat culture as demonstration of an infection and warrants treatment of the strep infection.

 

The site needs to drop the emphasis on ASO and add a statement about rule-outs

Q. Does a negative ASO titer rule out PANDAS?

A. No. A rising ASO titer can confirm a preceeding strep infection if no throat culture was available. A negative ASO titer could be due to many variables and one study found that 46% of culture positive children presented with a negative ASO titer.

 

Buster, really great comments on the website thank you! I wanted to comment on the throat culture, most of my daughter's strep was detected in their vagina. I'm sure we are not alone in this and that there is a lot of undiagnosed strep due to the fact that it is not presenting in their throat. Does it make sense to try to comment on that? I had no idea that you could get strep in any place other than your throat when all this started for us.

 

We had 1 negative and one positive ASO titer between my two girls both with the same strep infection.

 

Susan

[Suzan]

Susan, yes, I have the list from her and they are all on it.

 

 

 

 

 

Do we know if Dr. K, Dr. L, Dr. T, etc. are on her list of doctors?

 

Susan

 

Oh good, thank you! That helps me feel a little better.

 

s

[faith]

Throat culture is sufficient to demonstrate Streptococcal infection

The web site needs to add a simple Q/A about throat cultures and say:

Q. Is a throat culture sufficient to demonstrate association with streptococcal infection?

A. Yes. The AMA treats a positive GABHS throat culture as demonstration of an infection and warrants treatment of the strep infection.

 

The site needs to drop the emphasis on ASO and add a statement about rule-outs

Q. Does a negative ASO titer rule out PANDAS?

A. No. A rising ASO titer can confirm a preceeding strep infection if no throat culture was available. A negative ASO titer could be due to many variables and one study found that 46% of culture positive children presented with a negative ASO titer.

 

Buster, really great comments on the website thank you! I wanted to comment on the throat culture, most of my daughter's strep was detected in their vagina. I'm sure we are not alone in this and that there is a lot of undiagnosed strep due to the fact that it is not presenting in their throat. Does it make sense to try to comment on that? I had no idea that you could get strep in any place other than your throat when all this started for us.

 

We had 1 negative and one positive ASO titer between my two girls both with the same strep infection.

 

Susan

 

Susan,

but was it the Strep "A", or did they say it was some other like strep B? just curious. I too am confused about the different strains of strep, for the finger is usually pointed at "A". I don't think they know if B is troublesome as well.

 

Thanks

Faith

[Buster]

I wanted to comment on the throat culture, most of my daughter's strep was detected in their vagina. I'm sure we are not alone in this and that there is a lot of undiagnosed strep due to the fact that it is not presenting in their throat. Does it make sense to try to comment on that? I had no idea that you could get strep in any place other than your throat when all this started for us.

 

That was true for our daughter too. It's a great point. I think we can reference Kaplan's paper that skin strep doesn't cause an ASO rise. I'll group these together into a series of recommended changes.

 

Buster