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...
... From: karen moore To: nomidsyndrome@yahoogroups.com Sent: Thursday, September 22, 2005 4:05 PM Subject: Re: [nomidsyndrome] update on fynley to Fyn and...
... From: karen moore To: nomidsyndrome@yahoogroups.com Sent: Thursday, September 22, 2005 4:05 PM Subject: Re: [nomidsyndrome] update on fynley to Fyn and...
Dear Karen, Thank you for getting in touch. I suggested below that we could meet Fynley and his parents in the GOSH cafe after our 3.15 appointment with Prof...
hi david, im afraid we wont be around that late as we also have max now to think about, our appointment will be at the end of her morning clinic so im not...
Hi karen and eive , we should be able to get up there earlier to meet up with you both, i know it is hard as we all have travelling to do there and back, and...
Dear Karen and Lisa, We get to London only in time for our 3.15 appointment, so that I'm afraid we won't all be able to meet. But if Fynley's appointment is...
Dear David and Eive, It is not a problem, for us to meet as we are both in clinic at around the same time really, and we will definately have time to talk if...
Dear Lisa and Colin, Molly started colchicine at 500 micrograms and quickly doubled this. Prof Woo asked us to aim for 1500, but advised us that this could...
Hi david and Evie they gave us 500mg tablets broke in half to give to fyn for the first week and then we are to up it to 500mg next friday, but where fynley is...
Hi Lisa, Charlie has 3 colchicine tabs in the morning, we crush them and put them in his juice with 2ml of predinsolone - some cocktail!! hope this helps fyn...
Dear Lisa and Karen, Molly takes one tablet in the morning and another last thing at night, each with a sip of water. We give her a third in the afternoon of...
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