Dr Murphy's PANDAS/Cefdinir Study

[michele]

We did see Dr. Murphy two years ago. She was not for longterm antibiotics at that time. She felt families should be tested when strep symptoms present and then treated with antibiotics when positive for strep in the household. I thought we would get antibiotics visiting from OH but we did not get any scripts other then OT. She does know more on PANDAS then anyone I have spoken to as she has studied it wih Sweedo from the beginning. Her office was very nice and kind to us. She spent over an hour talking to us, plus she had another Dr. meet with us. She was not for IVIG or PEX treatment. Now her opinions could have changed over the past two years. I know she moved from Gainsville to Tampa. She is also very big on TS and tic disorders. She did think kids with tics may need to be on medications like clonidine and prozac for anxiety and comorbid symptoms.

 

I have been talking wih Dr. Geller's office and they told me his study on antibiotics has been put on hold for now but he is going forward with the genetic PANDAS study. It is 3-5 hrs and there is a $50 incentive. eamancuso@partners.org

 

I recently contacted Dr Murphy's office about her PANDAS/Cefdinir study. I heard they were in need of participants and I offered to post the study info in case anyone is interested in taking part. Dr Murphy is located in Florida. This is important to know since some in-office visits are required.

 

I only know what I am posting. If you are interested, please contact Jeannette M. Reid. Her contact info appears at the bottom.

 

So, I am cut and pasting the response as to not omit any information...

 

"The study investigates the use of antibiotic therapy in reducing symptoms presumed to be due to PANDAS. Children must be aged 4-13 years, with dramatic onset of OCD; anxiety; and/or tic disorders within the last 2 years. Children must be off other antibiotics for 1-2 weeks before starting the study. As well, a failed ‘correct’ trial of an antibiotic in the past is an exclusion criterion. (A correct trial is one at the right dose, and lasting at least 14 days.) The study will require 6 study visits (approximately every 3 weeks), which should each take 2-3 hours – as well as two follow-up phone interviews 1x/month. In the study, children will be randomly assigned to either an antibiotic (cefdinir) or placebo (an inert sugar pill)…so, each child will have a 50/50 chance of being on the antibiotic. Only one person involved with the study will know each child’s group, though the family would be informed at the end. While each child will, ideally, be able to complete the study, if there is no improvement by visit 3, Dr. Murphy will discuss pulling out for a different course of treatment. The study is free of charge – but out-of-study treatment would not be. Thanks!"

 

Jeannette M. Reid

Social/Behavioral Researcher

Department of PediatricsUniversity of South Florida

e-mail: jreid@health.usf.edu

office phone: 727-767-5583

 

Mailing address:

800 6th Street South

4th Floor North, Box 7523

St. Petersburg, FL 33701

Rothman Center phone: 727-767-8230

Rothman Center fax: 727-767-7786

http://health.usf.edu/medicine/pediatrics/...ndex.htm "

[thereishope]

In reference to the genetics study Michele refers to, the child needs to be 8 years old. From what I was told, if the child is too young, the parents along with grandparents can supply the samples w/o the child being involved.