Need a study on chronic illness in PANDA

[JoyBop]

I am appealing my insurance company's denial to see Dr. T. The denial letter gave me the names of two docs at Boston Children's who "can provide the same or similar services". I wrote a compelling letter explaining that those two physicians have only treated a few PANDAS patients. (That was what I was told by the doctor's assistant) The jist of my appeal is based on the fact that my child is dealing with many lingering symptoms and although he is somewhat better on abx, he is far from well and still dealing with flares.

 

I am looking for a legitimate study to include in my appeal that might exemplify how these kids can suffer for long periods of time or repeatedly. I think one of the problems we face in the medical world is either docs don't believe it exists (or just wont treat until a protocol is in black and white) or that its as simple as treating a strep infection for a short period of time and anyone with an FDA number and a medical license can write an rx for a week of abx. As we all know, its far more complicated than that.

 

Can anyone post any links to any studies are articles that would hold water to show how/why children will suffer chronic and episodic flares for years at a time? I am avoiding blogs and personal stories.

 

I would really appreciate the help.

[Mayzoo]

I only quickly skimmed these articles, so there may be more helpful data in them than what I quoted.

 

 

Pandasnetwork.org article under "How long does an exacerbation last?": http://pandasnetwork.org/prognosis.html

 

"There are times (cases #1 and #2) where the exacerbation takes 4 to 6 months to remit."

 

 

 

NIMH article under "what is an episodic course of symptoms?"

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

 

 

"The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep throat infection the tics or OCD return just as suddenly and dramatically as they did previously."

 

 

 

This one shows on the bottom of page 4 duration of illness is 2.8 years for PANDAS, BUT it shows 3.+ for non-PANDAS, so may not help much:

 

http://intramural.nimh.nih.gov/pdn/PANDAS-REF6.pdf

Edited June 8, 2013 by Mayzoo

[JoyBop]

Thanks so much for taking the tone to look those up. I have some reading to do!