I just wanted to say hello to anyone living with this hell on a
daily basis. My dtr. was diagnosed at 10 yo. We don't know how she
got it. One day she started with pain in her right foot. Each
winter it gets worse. She now has it in all 4 extremities. She has
gone thru aggressive PT programs for kids that promise she will get
better. She only regains mobility but the pain continues. I have a
hard time finding doctors to treat this medically since she is
young. They act like she can walk so she has to just learn to live
with the pain and someday maybe it will go away. I'm sorry but I
wish this dreadful disease on them or a loved one of theirs.. How
can you tell anyone, especially a child to just deal with it!! She
often wants to die and who can blame her. I know of one 14 yo who
went to Germany and had the Ketamine coma for 5 days. She had it
all over and now just has flare ups in her arm which improve with
Ketamine boosters.

I'm trying to take her to a pain clinic at Children's in Boston.
One of the doctors their worked in our area with the Dr. Schwartman
who beleives in the Ketamine treatment. He won't see my dtr. since
she is a peds pt. I will be open to hear about everything. Here
are some questions I have.

Since it worsens evey winter do I need to move somewhere warm? Do
you know anyone who lives in a warm climate that gets worse certain
times of the year?