NIMH FAQ on Pandas

[kos_mom]

Does anyone have any ideas on how we could get NIMH to take these down? They are sadly out of date. I have seen web activity posting this information to support BCH in disagreeing with antibiotic treatment.

 

http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal-infections.shtml

 

Relevant bits:

 

What are the treatment options for children with PANDAS?

 

The treatments for children with PANDAS are the same as if they had other types of OCD or tic disorders. Children with OCD, regardless of whether or not their illness is strep. triggered, benefit from cognitive behavioral therapy and/or anti-obsessional medications. A recent study showed that the combination of an SSRI medication (such as fluoxetine) and cognitive behavioral therapy was the best treatment for OCD, and that medication alone or cognitive behavioral therapy alone were better than no treatment, or use of a placebo (sugar pill). It often takes time for these treatments to work, so the sooner therapy is started, the better it is for the child.

Children with strep. triggered tics should be helped by the same tic medications that doctors use to treat other tic disorders. Your child's primary physician can help you decide which type of specialist your child may need to see to receive these treatments.

Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations?

 

Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep. by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there isn't enough evidence to recommend the long-term use of antibiotics.

 

The FAQs contradict the much more recent information NIMH has posted (link below) in the context of its current recruitment for the IVIG trials. Having both these out there coming from the NIMH is confusing to the public, which has been wakened a bit to the issue. Worse, they do a Google, find the FAQs, don't search any further and voila the PANDAS parents are whacko.

 

http://intramural.nimh.nih.gov/pdn/web.htm

[thereishope]

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Edited September 29, 2019 by Vickie

[Wombat140]

There's a new page? Where is it?

I've temporarily stopped using the OCDAction forum, which is usually one of my favourites, because someone dug up that NIMH FAQ and they all began beating me over the head with reasons why it couldn't work until it just got too depressing. So I'd be keen to see a new one!

[kos_mom]

Here is the longer paper

 

http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf

 

 

And here is the shorter reference

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

 

The FAQs really need to come down--they must be at least seven years old.

 

Ko's Mom