update on Lorelei.

[Brandi]

Man I wish i could say they came up with something at the new Dr today. He said whatever she has is very rare (duhh tell us something we don't know please) he suggested one fatal desease that is very rare but my sister really feels it is a stretch. He also suggested it was a different type of the aging desease that they had suggested last month. I don't know it is all stupid! I know they are not god I understand that. Just answers please!!!! We are so tired of being in the dark. And this little girl needs to put her weight back on.

[Eden]

I work in a hospital and I have the a lot of respect for the docs and nurses who work there - but no one knows a child like a parent and no one else is as invested in that childs life and health.

I'd suggest mom or dad (or even a good auntie) start doing a lot of research about her symptoms. There's an amazing array of data out on the internet these days. If there's a rare disease, there's probably a web page about someone who has it.

I've found a database that might be a place to get started. It's a rare disease database - you can use the search function to put in symptoms (just be sure to select the "all words" or "exact phrase" button or you'll come up with about ever disease in the database...) and see if there's anything there that sounds familiar.

http://www.madisonsfoundation.org/