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Dear Karen,
From what you've told us, Charlie is like our Molly. Until now we thought she was unique in having the CINCA mutation yet mainly presenting skin blotching as the only symptom. She is now four and a half years old, and started school in August. We posted an informal history of her condition on this website some time ago; it has not been updated recently, but you may find the comparison with Charlie a help.
With best regards,
David and Evie Campbell
----- Original Message -----From: karenmoore30Sent: 04 September 2003 22:49Subject: [nomidsyndrome] Our Little BoyHi 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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