Hi all, Good to hear from you. As usual our summer has been
crazy. Not enough time for fun. Sorry to hear some of the children
are doing poorly. Camille, Mike told me you called. How is Alice?
We have been thinking about and praying for her. How is Kennedy
doing? Camille, I have their phone number and would love to speak to
them if they need me.

Kieran has been doing well. We have had a round of bad mouth ulcers
this summer. They cause him alot of pain and nothing seems to help.
Someone told me recently to swish milk of magnesia??? around in your
mouth.????? He is still on the iron and naproxyn. It is amazing to
see him if he skips the naproxyn. His joint swelling is back as bad
as ever and the fevers start. His hives cover his body and his
iritis starts up. I am amazed how much that medicine helps. We are
being seen in St. Louis every 3 months for labs. His sed. rate is
remaining aroung 25. Not too bad.

I saw that the protocol for the nomid trial is posted online. I
haven't heard from anyone there. We did learn that Kieran's mutation
is the C1ASI gene. We did have some positive publicity this summer.
A wonderful dermatologist associated with Cardinal Glennon in St.
Louis named Alana Bree is or has presented Kieran's case at the
national dermatology conference. She said a physician from San
Francisco was also presenting on nomid. Anybody know who that is?
Good to get the word out.

Just 1 more thought. Our rheumatologist in St. Louis has a few
children on the drug for JRA that NIH wants us to trial and the
children have had complete relief of their symptoms. Granted this is
JRA but it still looks promising.

Oh, 1 more thought:) I work at a hospital in MO. and we had a child
with a rare brain tumor that had to be flown to Washington DC to see
a specialist. It was unclear what hospital the child was to be seen
at, Childrens or NIH but I hooked them up with the Children's Inn and
the Ronald McDonald House. The childs prognosis isn't good and after
everyone helping us so much, it was wonderful to be able to help
someone else. I was able to give them hints to DC and it was nice to
be able to help.

Take care all, you're in our prayers.
Michele Griffin