Hello to all of you. I first want to say thank you to those of you who responded to my intitial post on December 10th. I apologize for taking so long to...
Hi tammy, I dont know if you have read any of my e-mails about fynley smith, we have been on the website for about six months as fynley was diagnosed with...
becky, the number i have is 301-496-2237 for niki plass... happy new year! dori kaylas mom, age 2 chicago, il Becky Bakko <beckybakko@...> wrote: can...
Hi Lisa. We just had an appt with our Rheumi yesterday at Texas Childrens. She told us that his IGD level was not abnormal. He has had most of his IG's...
Hello everyone, I hope everyone had a nice holiday, the boys and I had a great Christmas, it was relatively quiet which was a nice change for us. I wanted to...
Dear Friends, May I wish you all th best for and a haelthy 2006!!! Allthogh I do not react on many USA based mail, I'm with you all This mail is also a test...
Dear Karen (Miko's mom) and Tammy, and All, Happy New Year! I wanted to say that reading everyone's HIDS stories is interesting, since before Seth was...
Hello to all. My doughter and I are going back to the nih on feb. 5-10 for our 24 mouth visit.I would like to know if anyone is going to be there then to....
We have a trip scheduled March 21 at NIH, anyone going to be there? Kate, whenever you guys have a spare moment I would love to meet the little miracle man....
I am curious to learn more about HIDS and maybe the other periodic fever diseases. I have read up on all of them, but have not found them to fit Isaac as well...
Hi, I am turning to the only people who can imagine what this is like. Clay had his shots yesterday. He was due for his 4 years boosters. He always gets sick...
Dear Kathe, When I read your current state with your son, I was so sad. It must be so hard to hear all our miraculous stories with the Anakinra, and to see...
Hi, I have been up tonight with Joseph and wondering if his discomfort is related to NOMID? This is new.... but he has been complaining of ear pain on one side...
Hi to everyone, Fynley iis having a flare-up the first in 8 weeks. he is in pain, at first i thought it was an ear infection but now i can not tell where the...
Kieran too gets a weird new rash. His has started since he has been on the anakinra. I took a picture and sent it to Dr. GB at the NIH. He mostly gets it on...
Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the nomidsyndrome group. File : /ok pic...
nomidsyndrome@yahoogr...
Jan 9, 2006 2:53 am
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I don't know if it work, but I tried to upload a photo of a rash Kieran had. It starts out like this and then gets a pin head white center. They never really...
Dear Fran, Seth gets that same kind of rash, almost out of nowhere on his bottom! I put Desitin-creamy, or Balmex on it. Occasionally, I resort to doing ...
Dear All, I was looking at Pub Med, and searched a few things out, since I have been thinking about Kathe all weekend, and her suffering child, and the others...
Dear Frends, Reading many questions, diseases and different appearances, I would also Advise you to check the www.printo.it. An European running site from...
Dear Lisa, We are sorry to read of Fynley's continuing distress, and of the lack of a straighforward diagnosis. Molly's symptoms too are periodic, at least in...
Karen, Joseph and Seth sound soooo similar it is unreal! Same rashes... same diaper prob's as infant etc. I always said I should have taken stock in Desitin...
Karen, Thank you for your kind words. It has been sad. I think our hopes were so high and it is now hard to believe that anything will work for Isaac. They...
Clay had really weird rashes when he was younger. It looks like a heat rash now. I was talking to his pedi today and we were talking about the rashes. We...
Thank you for sharing that site with us. I looked it up and read the information. I like that it is specific to kids and what the disease looks like in...
Hello to all, I have been trying, very unsuccessfully to get back onto this site! I think Kate has been involved with getting me back twice now! But, here we...
Hi, Sherri good to have you back,and thanks for the Christmas photo. We will miss you by 2 days.Alex and I are going up on the 22nd.Good to hear that Miranda...
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