Dear NOMID egroup, Thank you to all who have responded, and shared the phone number and info about NIH. I contacted them, and they are definitely interested...
Received a call from Dr. Goldbach-Mansky and Janet Jones Friday 1/31/03. Kieran's genetic testing was completed and he tested positive for the NOMID mutation....
Dear Everyone, Thanks agin for the information and help you all have given me the past few weeks. We will be going to see the doctorss at NIH the week of ...
Dear Karen, Thank you for writing to us all about Seth. May I comment on just one point you raise? You say that if he catches a virus his rash almost...
That is very intresting that Seth's rash goes away when he is sick. Phillip had a rash since birth however since the preylone, naprosyn and Methotraxte he only...
hi kim, i was just wondering if phillip takes zantac. our son, maxwell, takes the same medicines as phillip but he also takes zantac (and enbrel). i thought...
Dear Kim, Thanks for writing. It was very comforting to hear your feelings about people's statements about your child. I have sometimes been tempted to say...
Hi from the Barton bunch, I promise that the trip and photo's will be on the web soon. with regards to you mention of rashes, Alex has a rash all the time...
Hi Karen, Just thought I would write and let you know how our trip was with the NIH. It was BUSY!!!! We had hopes to sight see as well, like the Smithsonian,...
Mintcreek
mintcrik@...
Feb 11, 2003 2:03 pm
345
You guys made me laugh this morning. The Barton's have stinky poop and others (including me) are telling strangers their kid is contagious! I didn't do it,...
Dear everyone, Thanks so much for the detailed information about your NIH experience Sherri! It was so helpful to hear what it is like. I did not know that ...
Well, I believe we have hit a nerve.....hives!!!!......it is probably the one symptom of our children that people (even parents) can not accept. Alice has...
Good Morning, I know exactly what your saying about not doing enough, I have often felt that we were not doing enough to help Miranda. Some people do make you...
Mintcreek
mintcrik@...
Feb 12, 2003 1:50 pm
349
also, if and when you go to the NIH, there is a shuttle bus that will take you the 3-4 blocks to the clinic from the Children's Inn any time of the day....door...
hi karen, welcome to the nomid family... sorry to hear about seth's trials (and yours too, of course) i wanted to let you know that we have plans to visit the...
hi folks, here is janet jones address where she told me that i should send the medical reports to: Janet Jones 10 Center Drive MSC1828 Building 10 Room 9S-205 ...
Dear Everyone, If you need to call Janet Jones, her number is 1-877-278-4330. Her fax is 1-301-480-0676. All they need to start the process of booking an ...
Dear Evie Campbell, I tried to e-mail a message to you via the egroups system last week, but I do not think it went through. Thanks for letting me know about ...
Dear fellow CINCA/NOMID parents, Today we received from Paris the result of screening Molly's DNA. There is a "heterozygous mutation in the CIAS1 gene (R260L)...
David Campbell
D.Campbell@...
Feb 20, 2003 3:38 pm
355
Dear Karen, Many thanks for your e-mail below, kindly providing information about Janet Jones and her telephone and fax numbers. Do you happen to have an...
David Campbell
D.Campbell@...
Feb 20, 2003 3:46 pm
356
Dear fellow CINCA/NOMID parents, Following my earlier e-mail today (please see below) I have now received further information from Dr Prieur. I enquired...
David Campbell
D.Campbell@...
Feb 20, 2003 6:05 pm
357
Dear folks, Following my earlier e-mails today (please see below), I should have said that replies can be sent either to my e-mail address above, or to Evie's:...
David Campbell
D.Campbell@...
Feb 20, 2003 6:22 pm
358
zdear David and Evie, Thank you for sharing your results of Molly's mutation. I feel that we have much in common, since Seth is also very mild. The doctors...
Campbells I haven't received the exact lacation of the mutation that Kieran has, but I do know it too is on the CIAS1 gene. Kieran's disease is mild too,...
Dear Michelle and Mike, Many thanks for responding to our query. It looks as though the acronyms 'CINCA' and 'NOMID' serve at this stage in the research as...
David Campbell
D.Campbell@...
Feb 21, 2003 9:06 am
361
Dear everyone, I have a question to ask, since after correspondance with many of you, and reading the stories on the NOMID web site, I have discovered that at...
Dear Karen, I just made that comment the other day to one of Zachary's doctors. I've noticed so many mothers are nurses and I am a dental hygienist. Back in ...
The statistically high number of medical professionals in the NOMID group may have other explanations. It may be that you are more aggressive in finding a...
Dear everyone, Thanks to all that have responded to my question, and if any still need to, we welcome you input! The tally so far, from personal responses, and...
Dear Folks, At the present rate of research, it is doubtful whether any of our children will live to see a cure for NOMID/CINCA. To raise the large amounts of...
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