Hi everyone, Â Â Â I am Mariah's mom, I too, always read posts, but hardly reply, but I have to shout out to Marie Parker. Your son and husband were at NIH...
Melissa, I am so glad that Johnny and Lee were able to help you. It does help knowing that others are dealing with this disease too. I remember when Lee was...
Good morning!Ever since I've discovered " texting" this email stuff is ancient!! Anyhow, we are getting packed up and heading to Maryland on Sunday..Also...
Sharri, Â Good luck! I'm trying to get on the study too for the two month shot . I'm hoping i will start this summer.Rebcca Rebecca Bissett ... From: Sherri...
Good Morning and Happy Mothers Day - My wife and I recently found out that our 8 month old daughter has NOMID. She has had the rash since 2-1/2 days old and we...
Welcome Mike! I have send you an e-mail separate from the posts, hope it is helpful to you. Happy Mother's Day to all the amazing Moms! To anyone in the NY...
Welcome to the group Mike and Shannon Sorry to hear Morgan has this condition, but I get so excited when I hear the babies being diagnosed, as the proper...
Since this is very new I have to ask about mobility. Morgan is 8 months and has yet to able to roll completely on her side. Her legs will simply not go with...
This was the case with Quinn as well. She did not roll over until 9 months, sit unsupported until a year. She took her first steps at 18 months and is now...
We stopped PT due to the agonizing pain in her legs and since seeing the Rheumatologist he agrees with our prior decision. They are still in the process of...
Hi Mike, Ahannon and Morgan! Great you found that homepage; here you can get a lot of support and answers to many of your questions. My son Jan is 10 months...
Has anyone dealt with the enlarged head w/fluid at an early age...and if so, what procedure did you go with? Our daughter of 8 months old had an MRI that shows...
Hi Mike Tom had a VP shunt put in in 2003 when he was 9 years old. It drains excess fluid to his abdomen. Prior to that he was on high dose steroids which...
Thank you so much for your information and education. We will definately take everyones information to heart and share it with our doc's to make sure we all...
no problems hope you are able to get her more comfortable soon. Louise ... From: mike.oisten To: nomidsyndrome@yahoogroups.com Sent: Saturday, May 16, 2009...
Welcome Mike,Shannon and Morgan.Hope you get all the help you need for your lovely daughter soon.This place is amazing-I have recieved such brilliant support...
Aisling, Well said, Aisling in this excellent article! I hope that they can keep the hospital at a full functioning level. So sorry you have this stress on...
Hello Mike, My son Zachary is almost 25 years old. Somewhere between 15 and 18 months his head circumference went from normal to well off the charts. Not...
well done for speaking out aisling Louise ... From: aislingmcn To: nomidsyndrome@yahoogroups.com Sent: Sunday, May 17, 2009 10:11 PM Subject: [nomidsyndrome]...
We have not heard the word as to when we (Morgan) will be going to the NIH but I have a general question. Is there any A-typical length of visit and/or what...
Hi Mike and Shannon, Quinn entered the protocol in December and we returned once in March. Both visits were a week long, usually arriving on a Sunday and...
Thanks so much for the info. Our Rheum has been out of the country on Vacation and his partner is down with a medical condition as well so we haven't been able...
hello friend: I am glad to tell you one good news!i have bought one item from one site then i got it within 3-5 working days and the quality is high too.i am...
Dear All, I have been contacted by a producer that wants to interview people with NOMID that live in the Boston area, or the east coast. They want to make the...
Dear All, Update on the filming of patients with NOMID: The producer for the film about NOMID is willing to travel as far as the midwest, and southwest to film...
We finally have a semi-answer as to when we will be headed to NIH for further evaluation, but I have to give a big thumbs up first and foremost to Dr Bowyer...
Dear Mike, Thanks for the update, and I am glad that you will be getting some help for your daughter and anakinra soon! I have been thinking of you this week,...
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