nomidsyndrome : Messages : 1-30 of 2357

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1	Hi, for parents of N.O.M.I.D/C.I.N.C.A. syndrome children to comunicate. Cheers, Kate Barton Sherri,Gerard,Melhoney we now have a newsgroup so that we can get...	Kate Barton jkbarton@...	Feb 3, 2000 6:44 pm
2	Hello, my name is Sherri and I have a daughter with this awful disease too. She will be 5 in May, she was diagnosed 3 years ago. She was born at 30 weeks...	Sherri Putvin mintcrik@...	Feb 4, 2000 3:32 am
3	Hi. I want to know what medication your kids are taking and if they are really helping. Alex has been on a very small dose of Methotrexate (0.4) and prelone ...	Kate and John Barton jkbarton@...	Feb 7, 2000 2:12 pm
4	We have just increased Miranda's prednisone to 8 1/2 cc. She could not get around (crawling) without stopping every 6 inchesand laying down. She seems to be...	Jim & Sherri Putvin mintcrik@...	Feb 8, 2000 2:47 am
5	Well we have now been a group for almost a week and I was wondering if anybody had a topic they would like to discuss with the rest of the group. As you know...	Kate and John Barton jkbarton@...	Feb 9, 2000 2:52 am
6	I think it would be a good idea if everyone listed all the medications and the Doctors who prescribe them. I think it would be beneficial to compare who is on...	Sherri Putvin mintcrik@...	Feb 11, 2000 3:35 am
7	Hello again, I also have a guest book that I would like everyone to sign in to. The address is http://www.freegbook.nu/addbook.cgi?1506 I would appreciate it!...	Sherri Putvin mintcrik@...	Feb 11, 2000 3:50 am
8	Hi Sherri, great idea! Alex is on the following medications, I have included the dose and frequency as I think even when more than one of the children are on...	Kate and John Barton jkbarton@...	Feb 11, 2000 5:52 am
9	HI Evereone thourght i would add Holly's list of medication to your's Methotrexate Subcutaneous Injection 7mg in o.28mls once weekly Lasix(frusemide) liquid...	Steven Lim Steven@...	Feb 13, 2000 10:58 am
10	Hello Jim & Sherri Thankyou for your help on G .tube, i have decided to go ahead and let Holly have one, it is such a huge weight of my sholders i have...	Steven Lim Steven@...	Feb 13, 2000 11:41 am
11	Hi Sue, Thanks for your letter, I would love to see some photo's of Kristen if you get a chance. I am suprised that Dr Prier didn't give you any more names as...	Kate and John Barton jkbarton@...	Feb 14, 2000 6:55 am
12	Attached is my letter to Kate and John. At the end are questions which I would appreciate any insight/personal experiences. I am so pleased to be able to...	Alan Downey alan.downey@...	Feb 15, 2000 2:53 am
13	Sue, Alex has had two injections of steroids into the Rt knee. The first was done on the 3rd July 97 and Alex crawled up the stairs on the 4th. It was done...	Kate and John Barton jkbarton@...	Feb 15, 2000 4:05 am
14	Hi Sue I am Melhoney, Holly's mum she also has C.I.N.C.A. we live in London. this is just a quck hello, and to tell you that Holly has her leg's injected with...	Steven Lim Steven@...	Feb 15, 2000 9:11 pm
15	Dear friends, I like to use the opportunity to forward you a question of the Swiss doctor, how is involved for a knee surgery at a CINCA diagnosed child. We...	Gerard Noordhof gerard.noordhof@...	Feb 17, 2000 9:11 pm
16	Hope everyone is well. Have any children that you know of with this disease been treated with growth hormone. Currently Kristen is being evaluated for such....	Alan Downey alan.downey@...	Feb 24, 2000 2:13 am
17	We have a new address TerryL1000@... We are in the process of writing a synopsis of Alice's medical history. She is alomst 15, so we have a fair amounto...	Terry Lieffers terryl1000@...	Feb 28, 2000 12:55 pm
18	Looks like I had a typo Our address shoule be TerryL1000@......	Terry, Camille & Alic... terryl1000@...	Feb 28, 2000 1:13 pm
19	Hi Everyone I was hopping for some advice. Holly had a N.G. tube put in on Tuesday, she is being feed over night on nutrinni extra, 300 ml per night. Since...	Steven Lim Steven@...	Feb 28, 2000 8:57 pm
20	Dear Steven, I am so sorry to hear about what your family and especially Holly are going through. It might be helpful if we share e-mail addresses of our...	Alan Downey alan.downey@...	Mar 2, 2000 1:09 am
21	We are in the process of writing a synopsis of Alice's medical history. She is alomst 15, so we have a fair amount of history that I hopw someone can benifit...	Terry, Camille & Alic... terryl1000@...	Mar 2, 2000 3:01 am
22	Dear Friends, First of all I like to thank Kate and Sherri for organizing this E-mail box. It's one of the ways to improve our situation, both on personal and ...	Gerard Noordhof gerard.noordhof@...	Mar 2, 2000 3:07 pm
23	Doctor Prieur, A group of parents with CINCA/NOMID diagnosed children have found each other last 6 month. We have started with information exchange on our kids...	Gerard Noordhof gerard.noordhof@...	Mar 2, 2000 5:03 pm
24	Dear Gerard, Thank you so much for informing Dr Prier of our group and for also mentioning the conference in September.I wonder how many of our Doctor's are...	Kate and John Barton jkbarton@...	Mar 2, 2000 7:55 pm
25	Hi everyone, I have not been away, we installed windows 98 and have had some trouble. But, now we are up and running. (Ihope)!! Anyways, I have been reading...	Mintcreek mintcrik@...	Mar 3, 2000 3:14 am
26	Morning Friends, Thanks Kate for your responds, I read that John already has planned for making a Website. I did also. We really need to be found on the...	Gerard Noordhof gerard.noordhof@...	Mar 3, 2000 9:42 am
27	Hi everybody, Don't worry about the web page it should be free as we already pay for the internet services but they do limit you to how many megabits you use,...	Kate and John Barton jkbarton@...	Mar 3, 2000 2:19 pm
28	Dear Kate, Kristen was hospitalized once and successfully treated at home 5 times for increased respiratory rate, etc. The hospitalization was labelled as...	Alan Downey alan.downey@...	Mar 4, 2000 11:33 pm
29	Hello folks, Special thanks to Kate, John, and Sherri for taking the time to set up this very much needed web page. My husband, Derek, and I have wanted to...	Belinda Okazaki belin@...	Mar 5, 2000 9:54 pm
30	Hi everyone, Hope all is well with all of you. Good news here, Miranda is actually starting to eat!!! You don't know how happy we are to see this! This child...	Sherri Putvin mintcrik@...	Mar 6, 2000 3:06 am

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