Trying to update the NIMH website

[Buster]

I'm probably opening a dangerous topic here where there is lots of energy but not much control... but...

 

I've been frustrated by sections on the NIMH website that eventually conclude that PANDAS should be treated the same way as non-PANDAS OCD. This is just not in keeping with the current research and I worry is doing more damage than good -- where a child has an easier time being prescribed SSRIs and atypical anti-psychotics but can't get a 3 week trial of antibiotics.

 

I'm working on another angle recommending that NIMH focus on the auto-immune aspect of PANDAS rather than the streptococcal aspect of PANDAS. I think that NIMH needs to focus on the research indicating treatment and symptoms while letting the research continue on pathogenesis.

 

Here's a start...

 

To NIMH director:

 

In reading the NIMH website regarding PANDAS, I strongly disagree with the wording of the section regarding the recommended treatment for children with PANDAS.

 

In this section, labeled “treatment options for children with PANDAS,” the website refers to a recent study (without citation) indicating that combined CBT and SSRI medication is the best treatment for OCD. Assuming this is referring to March

et al

(2007) this study did not recruit patients matching the PANDAS sub-type. Given that the NIMH research is indicating a different pathogenesis for PANDAS there is insufficient evidence to state that SSRIs are appropriate for children with PANDAS.

 

Indeed, in 2006, Murphy et al in “Selective Serotonin Reuptake Inhibitor-Induced Behavioral Activation in the PANDAS Subtype” indicate that there is a high potential for increased behavioral activation at common dosing of SSRIs.

 

The recent research by Kirvan and Cunningham (2003, 2006) support the pathogenesis of an auto-antibody interfering with neuronal signaling and that remission of symptoms comes from the decline in the antibody.

 

Yaddanapudi ‘s research (2009) on passive transfer also indicates that it is antibodies that are causing behavioral change.

 

Given the black-label warnings on SSRIs, the increased activation level on SSRIs for PANDAS children, and the increasing evidence that symptoms are due to interference of antibodies and not to levels of serotonin or dopamine, it is improper to recommend SSRIs without a very clear warning regarding activation and the symptoms of activation.

 

Buster

[EAMom]

So much of the NIMH webiste in non-sensical and contradicts the current research (not to mention just good old common sense).

 

Here's an easy example:

 

Q. Could an adult have PANDAS?

 

A. No. By definition, PANDAS is a pediatric disorder. It is possible that adolescents and adults may have immune mediated OCD, but this is not known. The research studies at the NIMH are restricted to children.

Well...no! PANDAS is actually defined as having a pediatric onset...so an adult (or adolescent) could have PANDAS if it started in childhood. Such as the men in Peglem's Turkish paper http://www.turkpsikiyatri.com/C18S3/en/the...ticResponse.pdf

 

 

 

btw...some researchers do make mention of "adult onset" PANDAS variant:

Another interesting from this paper tidbit:

Even though PANDAS is a pediatric disorder by

definition, adult onset OCD or tic disorder patients associated

with GABHS have been classified as adult onset

PANDAS (Bodner et al., 2001, Church and Dale). Nevertheless,

NIMH has a tendency to describe the adult

onset form of the clinical picture as immune mediated

OCD (NIMH, 2006).

[LNN]

Here are some email addresses that might be appropriate (but hard to say - navigating the NIMHs site is no easy task)

 

swedos@mail.nih.gov Dr Swedo

paul.grant@nih.gov Dr Grant

 

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

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

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

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

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

 

maxine.steyer@nih.gov Maxine Steyer - not sure of her position, but she's the name given as to who to call for more information about Intramural Research at NIMH. I believe she's connected with the Office of the Scientific Director

 

Richard Nakamura, Ph.D. Scientific Director of the Division of Intramural Research Programs, rnakamur@mail.nih.gov

 

Maybe try a few each day. If anyone knows better connections, by all means, please post.

[Buster]

Here's an odd thought...

 

I was going through all the other diseases listed on the NIMH website http://www.nimh.nih.gov/health/topics/index.shtml

 

(Anxiety Disorders, ADHD, ADD, Autism, Bipolar Disorder, Borderline Personality Disorder, ...)

 

For all of these the format of the page is:

• What is it?
  
• Signs & Symptoms
  
• Treatment
  
• Getting Help: Locate Services
  
• Related Information
  

Perhaps the real problem with the NIMH website on PANDAS is that they spend so much time in Q/A that they've lost the basic stuff about symptoms & treatment.

 

I can fill out the following with all the citations, but what about something like the following:

 

What is PANDAS:

PANDAS is a pediatric autoimmune disorder characterized by the dramatic onset of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection.

Signs and Symptoms:

Children with PANDAS are first diagnosed with Obsessive Compulsive disorder or a tic disorder. In addition, these children may have emotional lability (sudden unexplainable rages), personality changes, anorexia, age inappropriate bedtime fears/rituals, separation anxiety, tactile/sensory defensiveness and marked deterioration in handwriting.

 

When a child has primarily vocal and motor tics, the symptoms have apparent overlap with symptoms of Tourette Syndrome; however, the children can be differentiated by observing symptom exacerbations over time. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated the exacerbation remits in 4-6 weeks. The rapid onset with significant remission is characteristic of PANDAS.

 

For children who have primarily PANDAS/OCD, the abrupt onset and remission after treatment for streptococcal infection separates the child from non-PANDAS OCD.

 

A throat culture at time of exacerbation onset is recommended to diagnose a streptococcal infection.

Treatment:

Streptococcal infections are treated with antibiotics.

 

Cognitive Behavioral Therapy has been shown to be effective on some children with PANDAS/OCD and to provide families with coping strategies. Caution is recommended for using SSRIs with PANDAS/OCD as there are reports of higher activation rates in such cases.

 

Several reports have shown effectiveness of immunomodulating therapy (IVIG and PEX) in combination with prophylactic antibiotics. These treatments are still considered experimental and have several risks. Immunomodulating therapies are not effective for Tourette Syndrome or other non-PANDAS OCD cases.

Getting Help:

You're pretty much on your own as this is a very recent disease and a lot of the doctors won't know about it. Hopefully you'll connect with another parent on the internet who has navigated the research and can help. Oh, you might consider an IEP for your child too ;-)

Research:

PANDAS is thought to be caused by three independent events:

• the production by the immune system of an antibody that can interact with neuronal tissue.
  
  
• a failure of the immune system to suppress this antibody
  
  
• a breach of the blood brain barrier such that the antibody reaches neuronal tissue
  
  

All three areas have active research results and require duplication of experiments to help reach concensus in the research community.

[LNN]

I absolutely love it! especially the getting help section. No truer words were written.

 

I have my email drafted. I just wonder about the shot-gun approach. I would love to get our comments into the right hands before our names get added to a spam filter at NIMH. Does anyone have any ideas on how to navigate the bureaucracy?

 

I find it ironic that for all the banging on doors we do and our refusal to stop advocating, we can't figure out how to hook up with the right person at the very institution that identified PANDAS in the first place! Finding the owner of the web site is even harder than finding a good doctor - at least there are a half dozen of those...

[thereishope]

I love the "getting help" section. My hurdle has been prophylactic antibiotics. I wonder if an update on the NIMH site would be enough for my docs. Unfortunately, they probably wouldn't even look at the update. Luckily, I haven't had the need to seek out IVIG or PEX....yet.

 

I am curious to see how the autism community and PANDAS community will eventually unite. If PANDAS surfaces during infancy or toddlerhood, one would not see the sudden onset and, in turn, may get the diagnosis of autism instead of PANDAS. Or the co-diagnosis will be an oversight.

 

But change has to start somewhere. But I am a realist. No matter what is put in that descripition, you will have a doctor nit pick at it and say "you're child doesn't do that. It's not PANDAS". Ex. My son, even after the strep was cleared, took 5 months to recover after his third exacerbation. I can see some doctor saying...it says 4-6 weeks. Not PANDAS. Even though his first and second exacerbations took anout 4-6 after strep was cleared.

 

Did you touch base about viral triggers and vaccines? Or would that open a can of worms?

 

Would you suggest mailing hard copies to NIMH building instead of soley emails?

[LNN]

Personally, I'd leave the vaccines etc out. Address what should be corrected. If we get too crazy, we will be completely dismissed. Baby steps....

 

I am trying to pin down an email address or two instead of a shot gun list. Will see what I can get today - in between this little thing called having to work for a living...

[thereishope]

Yeah, I know. I was kinda thinking that.

 

Personally, I'd leave the vaccines etc out. Address what should be corrected. If we get too crazy, we will be completely dismissed. Baby steps....

[EAMom]

Did you touch base about viral triggers and vaccines? Or would that open a can of worms?

 

Although it would be great if we could sneak in something like this (from Swedo's 1st 50 cases paper)

 

....not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

[thereishope]

I am very happy that when you type "PANDAS" in google now, this forum pops up a lot. When I first searched for it, the NIMH website was what popped up. I remember reading about PANDAS and thinking my son did not have it because he didn't have strep. Little did I know he actually had a + , active strep infection. He just didn't show symptoms. I actually lied to the doctor and told them he had a sore throat so they would swab him just in case.

 

After his rapid came back negative, our next step was suppose to be to a psychiatrist. Then we got a call that the culture was +. I shudder to think where we would be now if we never found out he had strep.

[TiredMom]

Hi Buster,

 

I know one of us posted that she "felt like a wiseguy" calling you Buster. I prefer to think of you as a MYTH BUSTER :-)

 

You're suggestions for the website look fantastic! Just a thought, I'd be tempted to add anorexia in the symptoms part. What say you?

 

Peggy

[DebC]

Clinical Behavioral Therapy has been shown to be effective on some children with PANDAS/OCD and to provide families with coping strategies. Caution is recommended for using SSRIs with PANDAS/OCD as there are reports of higher activation rates in such cases.

 

One thing to change is that CBT should be cognitive behavioral therapy. Our daughter has done this and it has helped.

 

I agree on the SSRI's. Our psychiatrist tried them for a few months and when our daughter's behavior became whacky every evening at bedtime, almost drunk behavior, I took her off the drugs against his advice. Within a week, those episodes were gone. It was unbelievable how they were extending her PANDAS exacerbation.

[EAMom]

Just a thought, I'd be tempted to add anorexia in the symptoms part.

 

I like that idea!

[Buster]

Hi Buster,

 

I know one of us posted that she "felt like a wiseguy" calling you Buster. I prefer to think of you as a MYTH BUSTER :-)

 

You're suggestions for the website look fantastic! Just a thought, I'd be tempted to add anorexia in the symptoms part. What say you?

 

Peggy

That was definitely true in our case. I think that's good... I modified the post.

 

Buster

[Worried_Dad]

Oh, man... that's CLASSIC! My kids love Mythbusters.

 

M-Buster, you've got your work cut out for you. Some myths die hard, despite overwhelming evidence to the contrary....

 

 

Hi Buster,

 

I know one of us posted that she "felt like a wiseguy" calling you Buster. I prefer to think of you as a MYTH BUSTER :-)

 

You're suggestions for the website look fantastic! Just a thought, I'd be tempted to add anorexia in the symptoms part. What say you?

 

Peggy