Tammy, I am glad to hear you made it home without incident. It was so great to meet up with you. I am sorry that we have to meet under these circumstances,...
Hi Lisa Thank you, for your reply. Glenn is on prednisolne, he has ½ ml every second day. Glenn did not have the chicken pox as bad as Isabelle. He coped...
Wayne Hand
HANDANDHAND@...
Apr 3, 2006 8:19 am
1074
Dear Kathe, I am glad you are back, and so sorry that you still have so much unanswered, and your son is suffering. I have no info. on the colchicine at all,...
Dear Kathe I am sorry to here that Issac has been unwell, we too were told by Dr Goldbach that they didnt feel that Fynley had NOMID, and his symptoms had some...
Dear All, I was again searching around for genetic databases, to see if I could fine one that listed all the current known mutations for NOMID, and how many...
hi! We arrived tonight and so glad to be here, long trip! Big accident on highway and we had to be re routed back north then 5-6 miles on a back road back to...
Hello karen i have just read the article and it is quite amazing to think they have medical documentation of this disease so long ago, the picture is...
Karen, Thank you for such a nice reply. They are doing testing for all the other periodic fevers that fit and for another syndrome. They are also doing...
Lisa, I have been following your posts and feel so bad for you and Fynley. We are getting all the testing done and just waiting on results for the other fever...
Dear Lisa and Kathe, My heart goes out to you all! I am so sad to hear that Fynley is not walking, right before age 2, and I hope that goes away. I hope he...
http://pediatrics.aappublications.org/cgi/content/full/114/1/e124 Thanks Karen for the article. I'm sure there are many more children then and now that are...
... the story straight before everybody with this mutation is give NOMID as a diagnosis. >> Hi Kate and everyone, Just a quick note... regarding having a...
Hi Lisa and All, Good luck with fyn on friday i hope it goes well with professor woo. I have been reading all the latest posts and have a few responses below, ...
Dear All, I tried to call you Fran, and left a message, but will try again another day. I want to talk to you about all this. Wow, how crazy is it with this...
Fran, I wanted to let you know I am thinking of you and Joe. I am sorry he is flaring again. Hang in there. You are one of the strongest women I have ever...
Karen Hey Woman I got your telephone message. I will try you around 10pm... and we can chat for a while. I am confused about Joseph... He is fevering now......
Hi everyone, It has been a while since I posted, Miko has continued to struggle for the last while and I am getting tired and frustrated again. I have an appt...
Dear All, As for genetics, I have only theories, and what I have read in the medical journal to go by, but there is a lot of opportunity for variance in the...
Karen A., I am so sad to hear that MIKO is having such a rough time. Have you called the NIH about the head changes, and the increased eye problems ,etc? I...
Karen, Thank you for all your genuine concern. Isaac does not have any CNS involvement and his hearing and eyes is very mild and was not a consideration but...
Karen I understand that alot of these disease cross over with symptoms, but to label patients NOMID just on the understanding that they have the CIAS1 mutation...
... Hey Karen, Either email me or call me, I have misplaced your number and I would really like to talk with you. How is Miko??? Please call and I will call...
Hi to all, We just got home at 5 pm, boy, change in weather!! It was raining and the air was warm at the Inn, yesterday the temps were well into the 70's (in...
hello all my daughter tiffanie is doing so well on the anaknra i'm so happy. but as for me i'm not when we went back in feb they put me me on daimox to i...
Dear Becky, I am glad to hear that you daughter is doing well, and so sad to hear that you are not. I hopethat the doctors can help you feel better, and save...
dear karen thank you for your kind words. i had high pressures before .it was gone for the the first year i was on the anakinra then when we went back for our...
Hi everyone, Thanks for the replys and info, it is so hard to understand this and I am so lucky to have you all! I had my appt with Dr P Dent here in Ontario...
Hello to all! It is truley spring here now! I just planted all my flowers and my husband and I planted 40 red raspberry bushes! I am now living on Motrin!!...
hello to all. I'm not doing so well with the the headachee on friday thay are going to do a spinal tap on me to check my pressure to see if it is high .the med...
... Hi Becky, I am so sorry to hear your not feeling too good. When are they going to do the spinal? I hope they can find some releif for you soon! Is your...
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