Updated NIMH regarding PANDAS 7/22/2010

[saidie10]

I try to remember to check the NIMH often for updates on PANDAS, especially treatment optioins. They show the website was updated July 22, 2010, plus it looks completely different than before. I can tell some stuff was added about symptoms and diagnosing recently, but the following is new too, right? This is moving in the right direction if so!

 

(the following was copy and pasted from NIMH section on PANDAS)

 

Q. What about treating PANDAS with plasma exchange or immunoglobulin (IVIG)?

 

A. The results of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin (IVIG) for the treatment of children in the PANDAS subgroup was published in "The Lancet", Vol. 354, October 2, 1999. All of the children participating in the study had clear evidence of a strep. infection as the trigger of their OCD and tics, and all were severely ill at the time of treatment. The study showed that plasma exchange and IVIG were both effective for the treatment of severe, strep. triggered OCD and tics, and that there were persistent benefits of the interventions. However, there were a number of side-effects associated with the treatments, including nausea, vomiting, headaches and dizziness. In addition, there is a risk of infection with any invasive procedure, such as these. Thus, the treatments should be reserved for severely ill patients, and administered by a qualified team of health care professionals. The NIH is not currently conducting any trials with immunomodulatory therapies, and so is not able to offer either or the treatments.

 

Of note, a separate study was conducted to evaluate the effectiveness of plasma exchange in the treatment of chronic OCD (Nicolson et al: An Open Trial of Plasma Exchange in Childhood Onset Obsessive-compulsive Disorder Without Poststreptococcal Exacerbations. "J Am Acad Child Adolesc Psychiatry 2000," 39[10]: 1313-1315. None of those children benefited, suggesting that plasma exchange or IVIG is not helpful for children who do not have strep. triggered OCD or tics.

[Buster]

This was there before.

 

What really annoyed me was the site update did not address the controversy section.

 

I would have loved a section like:

 

Q: What is the controversy in PANDAS?

A: The controversy in PANDAS is really 4 things:

a) whether strep infections cause PANDAS or children with PANDAS just have more strep infections

B ) whether the production of anti-neuronal antibodies are genetic or a byproduct of a particular strain

c) whether colonization is sufficient to trigger anti-neuronal antibodies

d) whether PANDAS is only triggered by untreated strep infections or also triggers for treated strep infection

 

(d) is by far the most important because the studies keep breaking the blind to "treat" strep infections. This would be like trying to prove a relationship between strep and acute rheumatic fever and treating anyone you see with strep and then complaining that your study was underpowered because you found no ARF.

 

Literally that's what's going on in the controversy.

 

I suppose an (e) is that researchers at Johns Hopkins can't seem to repeat a test run elsewhere. I suppose you could doubt either party, but I sure wish we'd get funding for replicating the research rather than just letting both parties fight it out in papers.

 

 

Buster

Edited August 6, 2010 by Buster