Hello Karen,

Glad you found the Nomid website and newsgroup. Our son Alex is 7 and has
NOMID. He had the MMR jabs until he was 6 months. Shortly after, he was
diagnosed and we stopped the innoculations. We haven't found anything that
he is especially allergic to, at least the intensity of his rash is not
predictable. Perhaps excessive heat brings it on. We also have a
daughter, now 5, who shows no signs of NOMID and is as normal as they come.
If anything she is a little tall for her age. The attached picture shows
Alex and Abby on their first day of school a few weeks ago after the summer
holidays.

I just dropped Kate and Alex off at the airport. They will spend next week
in Washington at the NIH to test the Anakinra drug. In preparation, we
stopped his Enbrel a couple of weeks ago. Within a few days he had trouble
walking, hobbling around although he was still his usual chirpy self. On
one bad day he had a headache, looked especially inflammed facially and was
vomiting. It was surprising the difference the Enrbel made. We'll see what
the Anadinra does.

Karen, let me know if you would like to add any details about you and
Charlie to the website:
http://pw1.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm

John Barton



-----Original Message-----
From: karenmoore30 [mailto:karenmoore30@...]
Sent: Thursday, September 04, 2003 4:49 PM
To: nomidsyndrome@yahoogroups.com
Subject: [nomidsyndrome] Our Little Boy


Hi All,

Our son Charlie has been diagnosed with CINCA Syndrome by Prof Woo at
Great Ormont St hospital. However after reading some of your stories
on the web site he seems to be quite mild. He has a new mutation in
the gene (whatever that means) and so far he seems to just have the
rash. He was born on 1st July 02, so is just 14 months, full term
no abnormalities at the birth. His rash came up after 4 days, and
we just got a diagnosis in May this year. We live just outside
London, and blood tests for both my husband and I have just been
taken to see if we have it too.
Why am I here on the web writing this?? I think I just need to talk
to people in similar position, and find out things like, did your
children have the MMR ?? were there any effects from the MMR ? are
there certain things that the children react badly too, ie allergic
reactions ?? Are siblings effected, or can you have other children
that wont contract the gene. Charlie at the moment seems ok, his
eyes are normal, hes having 6 monthly checks and is on a small dose
of antihistamine. But we dont know what he will have in store for us
as he gets bigger. Lets hope he stays smiling as much as he can.
Teething seems to make him worse, does any one else find this too ??

Anyway, would be great to hear from you,

Love Karen





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