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Hi David, Eve and Molly,
thats great news, you are now under professor woo? when did this all happen? charlie is also on the colchicine - 3 tablets a day, how many does molly have? he is also still on 2mg a day prednisolone steriods, but i think we are aiming to get him completely off of these in the next couple of months.
we were up at GOS last friday and are just waiting now for some more blood results looking at his SAA levels, this will then determine if he starts the anakinra or not, hopefully his levels will be ok, as all other bloods are at the moment.
charlie is now at nursery just 2 mornings a week, moving up to 3 mornings next week then school nursery, 5 afternoons from january. hopefully he will get on ok with it all, he seems to be getting a bit stronger as in the fact he has managed to go for the last 4 weeks with no sickness.
we have had another baby boy, Maxwell, he is now nearly 5 months already and showing no signs of CINCA thank goodness.
anyway, its good to see your email, speak soon
karen, ian, charlie and max
Evelyn Campbell <evie@...> wrote:
Evelyn Campbell <evie@...> wrote:
Hello everyone,We haven't written to you about Molly for three or more years. She is now six years old, and in her third year at school. She has a twist to her walk which looks permanent, but in general her symptoms are mild compared to other NOMID patients. Professor Woo at Great Ormond Street Hospital for Children, in London, has recently set her on a course of colchisine in order to counter the inflammation. So far her blotching is lighter, and her skin is smoother than it has ever been. If this drug turns out not to be effective enough, however, then anakinra will be considered.Though we have not been writing to you we have read your e-mails, and our heartfelt good wishes go out to you all.FromDavid and Evie Campbell
John and Kate Bartonwrote: How time flies.
Our NOMID website has been up and running for 5 years this month with over
12,000 hits to date. I thought this might be a good occasion to update the
information on the website with any new information or pictures. Let me
know if you would like me to add anything about your child to the website --
as little or as much as you like.
Photos and a few sentences of updates are especially welcome. Anything
from families not yet listed on the website would also be very welcome.
John and Kate Barton
http://pw1.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm
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