Hi Karen,
Welcome to our group! This is a great place to find out about the disease
when no one else has any answers for you. It took us almost 3 years to get
our daughter diagnosed. But before we knew, it was an emotional
rollercoaster! All the testing and ruling out of many diseases. It was very
scary. Now that we know, it seems to be a little easier to handle, but in
the back of your mind, is the " what if" and "why". Our daughter is 8 and
she is still the size of a 3 year old, she is on steroids everyday, has been
for almost all her life. You might want to contact the NIH, they are testing
these children. I myself and some of the other parents on the site have been
there for testing too. Miranda does have the mutation, she definitely has
CINCA. When Miranda was diagnosed, we stopped all immunizations, she did
receive one MMR, but she hasn't had any since then.
I hope you post a story and a picture on the site, we would love to hear
from you.
Good luck and take care.
Love,
Sherri
----- Original Message -----
From: "karenmoore30" <karenmoore30@...>
To: <nomidsyndrome@yahoogroups.com>
Sent: Thursday, September 04, 2003 5:49 PM
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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