Hi John,
When did you get the call for the NIH"? We have been waiting and no one has
even called yet. Are they officially starting the drug now"? Please keep me
and all of us posted as to how Alex handles this, ok"? Is Kate at the
Children's Inn"? When you speak to her, please let her know we are all
thinking of her and Alex? Hope all goes well. keep in touch.
Lots of love,
Sherri
----- Original Message -----
From: "John and Kate Barton" <jkbarton@...>
To: <nomidsyndrome@yahoogroups.com>
Sent: Sunday, September 07, 2003 11:26 AM
Subject: RE: [nomidsyndrome] Our Little Boy


> 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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