Hello,

I just want to wish you all that are on your way to the NIH, or are
already there, the best of luck, and I am hoping and praying that this
medicine is the miracle drug! I also hope it will be tolerated well in
all our children! Seth has mild NOMID, and I wrote to Karen Moore
about him a few days ago. If the medicines work well for the other
children, then Seth will come back to the NIH and receive the medicine
to help reduce the affects and inflamation from NOMID, but to also try
to prevent the progression of symptoms. Seth has mild optic disc
edema, slight sensoneurial hearing loss, and elevated CSF pressures,
but is not affected by it cognitively or mentally (yet). He does have
spells of fever, increased rash and flare ups of terrible pain in his
head, spine joints, stomach and all over but has no bony changes on
Xrays. We are fortunate that he does still respond well to his
naprosyn and Zyrtec, and that we have not had to do more intensive
medications. We still plan to do the new medicne, when it is available
to him, since we want to prevent further affects, and hopefully reduce
the problems he already has, since he did not have the eye and hearing
affects 2 years ago. He will be 4 the end of this month, so he's
young!

Helly to Molly's family too! I would love to hear how she is doing
right now, since she is close to Seth in age, and in her presentation
of NOMID.

Thanks to all of you, and welcome to Karen, and Charlie!

Karen Durrant