Diana's notes from mtg w/ Cunnigham

[thereishope]

I'm not original 20. I just first contacted her a couple months ago. I originally contacted the site just so my son could be "accounted for". I am now trying to contact various outlets (ie, OC Foundation) to let me know about the website, get them to look at it, and keep it on file for reference. If more notable organizations ackowledge the website, our children would get better care since things like propholactic antibiotics and IVIG are talked about on it. I have gotten only positive messages sent back to me from different place commented how they like the site, believe it is a great source of information, and will utilize it.

 

I also try to join other forums that a possible PANDAS parent might vist or stumble on and give a very brief explanation of it and put myself out there as a contact. I then try to inform them about pandas network, this forum, and a facebook one I visit a lot.There are still parents out there that feel they are alone and have never even spoken to another PANDAS parent. When they contact you the first time, it's as though you've just thrown them a life perserver. They are no longer alone.

 

I think, but not sure, that pandas network, will take your info and keep it on file. I think that is very important so bigger numbers are reflected. The bigger the numbers, the more attention a disorder will get. It also helps for seeing patterns, overlapping symptoms, etc. As for cases on the website, not everyone that contacts her is reflected directly on the website. But like someone else said, they are documented offline.

 

 

 

are the ones of you that are replying to this thread cases who are included in pandasnetwork original 20 or compiled 70 cases? i've not actually spoken with anyone from this forum or pandasnetwork except in these posts.

 

obviously, we're all at differing stages of the illness and working with different healing methods. i don't really have a handle on how many cases are on this forum. does anyone know?

 

please correct me if I'm wrong - it seems there was a wave and a group started by Diana - pandasnetwork states symptoms began 2007-2008. is there now a second wave beginning 2008-09? (I'm thinking in terms of school year b/c that's how my mind works now and my son began sypmtoms Sept/Oct 2008.)

 

or are most of you included in the pandasnetwork cases?

 

~Kathy