Hello all, I was wondering if anyone has been on infliximab? NIH docs are thinking of trying Isaac on this and I just wanted to know of any experience with it...
Hello to all, just thought i would drop a line to say Hi, We have been very busy at home with extenal issues and my mum has been in and out of hospital, she is...
Lisa, I am so sorry to hear about your mother. You have a lot to deal with right now. When Isaac was weaned off steroids, his rash became much worse. We...
Hi Lisa, Just a quickie, every time we drop Charlie a mg of Pred his rash gets worse but then after a week or 2 seems to settle down again. We are on 2mg at...
hello to all I have notice when my rash was out befor i was on the anakinra my rash came out more when it was hot out durring the day and got cold at night it...
Hi everyone, I figured I'd send a quick message to everyone, seems life is keeping us all busy. I am so glad to have the nice weather (except today which is...
Hello to all, I just wanted to wish all of the "special mom's" on this site a very Happy Mother's Day!! I hope everyone gets a well deserved day with flowers,...
... the ... turning ... month? ... Hi Karen, I wanted to wish you a very Happy Mother's Day!!! Hope things are well with everyone! I too, did have some needles...
Dear Everyone, I just wanted to let you all know that the NOMID Alliance is official in the State of California. It always takes awhile to get these things...
Hello all! It's been a while since we've been able to respond to your e-mails, phone calls, etc. Like Camille said, I too can be a "shadow" reader on our...
I too am worried about the anakinra. Kieran was on it for 20 months when he started having problems. We have up'd his mg/kg dosage and he is still breaking...
Dori, and all, Dori-Thanks for wanting to join the board for the NOMID Alliance- I have been hoping you would! It will not be too much work, and we will make...
hello eveone just wanted to let you know how my daughter and i are doing My daughter is doing very well still witch is great.but for me i still have the...
Greetings All. Alice had successful glaucoma surgery about 6 weeks ago. Dr Rubin was so helpful to us and our local doctor. They talked several times. Dr...
hello all my doughter and i are going back to the nih on august 6-10 is anyone going to be there at that time.becky ... Yahoo! Messenger with Voice. Make...
We are leaving next Tuesday morning for NIH. We will be there through Sunday. I believe they are going to try Isaac on Infliximab. It is an IV drug. It...
Kathe, I pray all goes well with Isaac here at the NIH. We arrived yesterday and we are in room E 7, the cell number is 773-600-5947. Please find us after...
Hi all, Just wanted to check in and say hi, ive been keeping up to date on the site, and was about to voluteer for the board Karen when you stated that you...
Hello to all, We're back from the NIH and thought I should send a quick note to keep up. The trip went well for the most part, thankfully no bad reactions...
That would be great to connect. I will look you up. How long into the week will you be there? Kathe ... From: Dorelia Rivera <doreliarivera@...> To:...
Hi to all, i have just catched up on all the post, and its great to here that a most of are angels are doing well at the moment, Fynley is to. He has have...
Hi Lisa, great to hear Fyn is so good at the moment, we are up at GOS next Friday 9th June very early about 9ish, if you are around would be good to see you. ...
Dear Everyone, I tried, but cannot change our dates to go to the NIH, so we are still scheduled to go from August 1-4. I was hoping to be able to move it back...
Hi Karen, I only have a minute right now, but can write later, just wanted to let you know that Miranda and all of us are going to be at the Inn on July 30th...
hello to all we wont be there intell august 6 th -10th we wont come intell late it take us 7hours to fly there. so we wont be there intell about 8pm on the 6th...
Hello everyone! We returned from the NIH last Thursday. It went well... although we were supposed to go to Children's Memorial Hospital in Pittsburgh because...
Hello to all, Dori, glad to hear you got home safe and had some fun as well. I have heard of Sesame Place and it sounds great. I bet Kayla was very excited...
hello jennifer i would love to meet up with you. so far we don't have any appointment on the 10th so we can try to meet that day.we will be staying at the...
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