Thank you for your reply..
We are now taking action. My son just had a total break down, he can not handle the constant pain and the fact that he is tired all the time. We have chosen to put pressure on the system/hospital, we have to act and will use all the information we can find to get som help now.
This will be put to use..
Thanks to every one participating in this homepage...it helps soo much to have a channel outside the official systems and hospitals.