I'm sure Rowingmom will be here soon to help guide you. If not, I'll email her, or you can! Just find one of her old posts and click on the blue envelope under her screen name.
I'm so sorry for what you are going through.
The only site I know of that deals specifically with children and Lyme is:
/sites.google.com/site/drjoneskids/home It might help for you to do some reading there?