Hi, I told the foster Mom about the debra site, she's done nothing with it. His current docs need to give referrals for pain team to step in, EVERYNONE keeps passing the buck on this little guy....
Thanks for responding to me, you have been the only one, which again shows just how rare this horrible disease is. I've been working with him for 3 weeks and after numerous phone calls to his doctors...
I just started a home care case Friday with a 4 year old boy with this awful disease! He's been in the hospital last month, state took him from Mom, no where else for him to go. I know nothing about...