Dear Michelle,

Sorry to hear about the mouth sores. What works for this is a 1:1
ratio, about 1/2 tsp. of maalox liquid and !/2 tsp. of liquid Benedryl
to swish and spit. This is from my past Peds ER experience with bad
cases of hand foot mouth and other mouth ulcers. Do this every 4
hours, but do not have him swallow it, since that would not be good!
It really works, my mom did it when she got some viral mouth sore too.

As for the Dermatology convention, the Dr. from S.F. is Seth's Dr.
Ilona Frieden and she was presenting on Seth, and maybe some other
cases of NOMID but I never found out what was actually presented. She
is actually an expert on the NOMId skin biopsy characteristics. I
heard from the NIh that there was a Dr. from St. Louis also presenting,
and I told Dr. Frieden's resident, in case they wanted to connect. The
resident never called me back, and never got all the info from me, but
hopefully she got what they needed from the NIh and it all went well.
The Dr. is planning on doing a case history thing for a journal as
well. If I ever get any more info, I'll share it!

You know, Seth really is helped a lot by the Naprosyn, and his Zantac,
Iron (liquid) and calcium supplements (TUMS, about 4 regular strength a
day to boost his Calcium stores). The Naprosyn really is great, and
luckily such a mild medicine, it is hard to believe it helps. I think
that Kieran and Seth are very similar in their NOMID, although their
mutation is different from each other. I sure wish I could hear ow
that Derm. convention went, since both our sons were part of the data
for the presentations.

I sure hope that that family you helped with info. about the NIH and Dc
is doing ok. It is amazing how things happen and later they are a true
blessing, since you can help other from your experiences. I think
about thaty a lot, especially with all our children, and everyone in
this group.

I am glad to hear that you all are doing well, and hope everyone else
is too. I have meant to write you sooner, Michelle, so thanks for the
message!

Karen Durrant