Hi Karen Friday's visit to GOSH was okish, i suppose at least we have now been seen there, but there was no medical notes at all from Portsmouth which was...
Oh god what a pain... at least she had something, and at least now you will get some very much needed support, bloody hospitals though cant believe they...
Dear Colin and Lisa, I was so hoping more would be done, and I know how frustrating it is to find that the doctors offices have not sent the medical records as...
Hello to everyone! It's been a while since I've had a chance to write, it seems as if there is still alot going on with Fyn... poor thing! I pray you get some...
Hello to all NOMID families, I wrote back several times to several of you and was not sure if you had received my e-mails or not. We had computer gliches...
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...
There is a website that you access through The Childrens Inn website, and on that home page you can go to the left and click on "CarePages" and you'll get to...
hello kate i would like you to put tiffanie bissett on your website her birthday is augs.25 1995 mother becky bakko dad ryan bissett and i have nomid to so you...
Hi Dorie!! Very glad to hear from you! How is little Kayla? How is your mom?? Every now and then Miranda will say "Hola" it's pretty funny.. We are going to...
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...
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...
Anyone, I have sent two e-mails, the first one responding to our new members and the second one wondering if anyone will be up at the NIH this coming up week....
Dear Karen, Many thanks for responding to our e-mail. Molly started the colchicine course this summer. Has Charlie benefitted from colchicine in any way? We...
Dear Jan, I got your e-mail for the e-group, so they are coming through! We just went to the NIH in July, so we do not need to go for awhile. I cannot write...
Hi there, No charlie didnt show loose stools when we increased him from 1 - 2 - 3 tabs, he does occassionally have a runny bottom but then he lives on baked...
Thanks Karen for your reply. We just came back from the NIH this evening and will update everyone after we have rested. Take Care, Jan Karen Durrant...
..but not out. Our internet service provider has placed a limit on the number of hits allowed on our website. Apparently hits to the website have exceeded...
Hello to all, I write to thank Kate for her time lastnight. I am in process of revieving this diagnosis for my 19 month onl son and have been a complete...
Dear Karen, I am glad that Kate called you, she is an amazing and very supportive person! It is too bad that the site is down, I guess it is good that it is...
Dear Karen, You refer below to 'the archived stuff on NOMID'. Is there internet access to this archive? If so, could you tell us how to access it, please? With...
Hello everyone, i am sorry, i have'nt been in touch lately but colin and i seemed to hit rock bottom after visiting GOSH as they started the process's of all...
Dear Lisa, What time is Fynley's appointment on 18th November? Ours is at 3.15 p.m. We are sorry to hear of his distress, and hope that the colchicine helps. ...
Hi david and evie, thanks for the reply so quick, Our appointment is for 2.40, so just a little while before you so i am sure that we will see each other...
Dear Colin, Thank you for your message. We usually wait in the play area, and with luck we can meet there after your appointment, and perhaps arrange to chat...
Hi everyone, we have attended the fever clinic with Prof woo at gosh on a friday afternoon, all i would say is go prepared with lots of questions as there will...
to Fyn and Mollys parents. Prof Woo has given us an appt at the end of her morning clinic on the 18th, so I was just wondering if you would like to meet for...
Hello all, I wanted to write sooner to tell you about my son Michael, but this week has been crazy! I would love to explain my whole story but I don't have...
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