I looked at the rutgers website and it's set up very similarly to braintalk, but all for spinal cord injury. There are parents posting there. One thread was specifically by and for parents, and I thought that maybe if you go there, you might find other parents to connect with who could be helpful. Here's the link to the parent thread:

http://sci.rutgers.edu/forum/showthr...t=66585&page=2

I can hardly imagine how a parent deals with this, especially early on. But what I've found with my own issues (spinal cord cyst removed in Feb), the most helpful thing was finding the patients who'd made ushering other folk through the process of dealing their raison d'etre. Two women from this forum, spinal disorders, had so much information and ability to convey it that it helped focus me on what's important and what's not, beyond what I could figure out on my own from reading literature and studies. Even from listening to the spine surgeons.

So perhaps the most important place to look for your online help would be from other parents. Also, the Reeves' Foundation site, which I posted on the peripheral neuropathy board.

I hope you find a board which can be your "home" away from home that gives you what you need. Those of us who know you from the peripheral neuropathy board are all feeling for you.

LizaJane