Getting the word out for all of us

[1tiredmama]

I have been thinking a lot about the BCH incident, as we all are. I think now is the time to harness our collective energy to help not only this family, but all of our families, even those to come after us. Think about all of the negative comments we have endured from the medical community. Look at the overwhelmed, handful of terrific doctors working out their ALONE for our children. And, need I mention the insurance industry who stands in the way of attaining care for our sickest, most chronic cases???

 

Let's start thinking about what we can do. Now is the time! Strike while the iron is hot!

 

I have contacted NPR via e-mail hoping to attract their attention to our plight. Here is a copy of my correspondance:

 

"Have you seen the facebook page of Boston Children's Hospital? A lot of activity over the recent removal of a very sick teen from her parents' custody because the child's physicians do not "believe" in her previously diagnosed condition, PANDAS. NIH has researched this condition, validated it, and recommended a course of treatment intramural.nimh.nih.gov/pdn/web.htm

 

I can't help but think of your interview with Candice Millard, author of Destiny of the Republic. In her research, she found that, in the 1880's, American doctors laughed and scoffed at the idea of "invisible germs," as Joseph Lister (a French physician) begged them to sterilize their instruments and clean their hands before touching an open wound."

 

We are an amazing group of educated parents. We can do this! Let's make this incident a springboard! What can you do in your community?

[kimballot]

I would like to help in any way I can. My son was in a locked psych ward on two occasions. We admitted him voluntarily as we could not keep him safe at home. The personnel did not have the background to treat him and were not interested in admitting that this was a post-infectious incident. However, to their credit, they also did NOT stop his antibiotics nor did they introduce any neuropsych drugs. They did have CPS investigate our family, which was heartwrenching, but the CPS worker was very good and left with a good education on PANDAS and the case was dropped as "unfounded".

 

I realize that my situation could have easily turned into what the Wrays are facing now.

 

I commend anyone who is going public and facing media regarding their PANDAS stories. However, I want to say that if we are going to see real change we need to EDUCATE health professionals and CHANGE our healthcare system.

 

I would like to see a concerted effort to develop some sort of continuing education module for health care providers on PANS. It would need to be 100% evidence-based, which means that many people would feel "left out" because the specifics of their child were not addressed. However, if we can develop an evidence-based protocol for PANS evaluation and treatment (it could be based on the PANS 2012 article), then we have something to work off of. The module could be put into a "stock" power point presentation with specific talking points and could be delivered by residents and fellows from some of our PANDAS-friendly University affiliated clinics (eg; Yale, Columbia, Rothman center in florida)at medical conferences. The residents/ fellows would bulk up their resumes and teaching experience, and the information would get out. It could also be offered to medical schools throughout the country and could easily be videotaped and offered via distance learning as part of the infectious disease or immune system component of medical school.

 

Once physicians are educated about PANS then protocols can be established - followed by guidelines and "best practice". All of these things are what physicians follow.

 

The first thing we need to do is come together as a community, though, and recognize that we will never all agree on what needs to be in such a protocol. It would be a work in progress.

 

The second thing we need to do is STOP any competition among PANDAS support groups. It seems that all groups are coming together to support Elizabeth. Surely all support groups could come together to promote PANDAS education and policy change. There is plenty of work for all.

 

One of the greatest moments of my life (and I am not kidding) is when we won the Pepsi Refresh award. We all came together for that purpose and WE WON. We can do it again!

Edited October 6, 2012 by kimballot