Hello Everyone,
Karen and Kate, I am so glad you guys were at the NIH. It is such a
great thing to be able to talk to other parents. Kieran had such a
good time. He didn't want to leave. He came home and told his Dad
all about Seth and Alex.

Kate, I was surprised to read about Alex'x orthopedic surgery. Is
it absolutely necessary? External fixators? YUCK!!!! He will not
be a happy camper. For all of you who haven't had the pleasure of
meeting Alex, he is a 9 year old boy with the energy of four 9 year
old boys. Lumber puncture slumbar puncture....nothing keeps Alex
down! It is amazing how much I adore him and Abigail and we have
only just met. Let me know about the shunt Kate. I would like to
hear from you when the date is. We will keep him in our thoughts
and prayers until it is done.

Karen, I was so upset I didn't get to say good-bye and take a
picture with Seth. We looked everywhere for you. You were probably
back at the Inn. It was good for Kieran to meet Seth. It helps him
to understand everything better. How did all of your visits end up?

I thought we were out of the woods this trip but in the end we found
out Kieran's kidneys are spilling protein. 3 urine analysis and 1
24 hour urine later, they decided it was really positive. We are
testing him again this Wednesday and hopefully all will be well. I
have been researching proteinuresis and have decided not to worry
too much until we have another positive. Maybe it was a virus or
something small. Micro was negitive last I heard. Addtionally,
Kieran's mouth ulcer was NEGITIVE for herpes. I found that
interesting although Dr. G was pretty sure it wasn't. Any others of
you out there have children who get frequent mouth ulcers? Know
anything that helps?

Kate, my hubby and I talked a lot when I got home about a foundation
or something. Maybe we should try to set up a mini conference for
those who want to get involved and come up with some ways to help
spread the word on this disease.

Karen, What was that genetic webside?

Hope you all are doing well. For you new folks who have just gotten
diagnosed...get in with the NIH. Look at Kate and John Barton's
website. It is where I started. I printed off the info and would
take it with me for Kieran's doctors and caregivers to read. There
are so few people with this disease you parents will need to become
the experts. The best way to do that is to network with the rest of
the group. The anakinra has completely changed my son's life. If
you saw him you wouldn't believe he had anything wrong with him.
Normal kid, normal size, normal mentation. He grew at least 3
inches and 10 pounds this year on the anakinra. Before the anakinra
he had terrible hives, iritis, swollen joints, frequent high fevers
and was starting to get headaches. I can't stress how important it
is for your children to start on the anakinra. It has completely
halted the disease for us. I don't know what this kidney thing is
all about, but hopefully no big deal.

Before I close I wanted to share a little bit with you guys about
Kate and Karen. They are both completely dedicated to fighting this
disease and informing the world of NOMID. Kate has written letters
to Oprah 8 or 9 times and every other TV/magazine out there. She is
amazing. I don't know what I would have done without the Barton's
website and message board. I look at Kate like the Momma of the
group, although she feels more like a sister, English accent and all!

PS.Kieran wants me to tell you all he is giving himself his shot.
He is 8 years old and VERY proud. He rarely cries and he does it
very quickly. I think he feels more in control.

Hugs Hugs
Michele Griffin