Glad you found our group.Have you managed to read any of the other
children's stories. It's not a disease that fits into one box as each child
has different symptoms than the next.
If you would like to tell your childs story and photos, John will add them
to the group.
As a baby Alex would either sleep of scream, but I remember him sleeping
about 18 hours a day. You ask about the fevers. I think that most of the
children have had those in the past, but this new medication is just
wonderful in keeping that at bay. It can however mask any infections which
is it's downside.Untill this drug became available to our children we were
stuck with steroids and not much more to combat the flares. Alex was on a
dose of 1060mg of pulse steroids weekly. he is now on 2mg daily, we have
even managed to stop alot of the other drugs. And the energy they have is
wonderful. I hope that you both get to go up to the NIH for some help.
Congratulations on the new baby Camille and Terry. Hope everybody is doing
well, We will be going back to the NIH end May for more treatment. Let me
know if any of you are going


Love Kate