Hello all, We are going to start on Anakinra soon and I have some questions. I have read here that most seem to see results within 24-48 hours. Is it...
Hi Kathe, I can tel you first hand that Anikinra worked almost immedialty for our grandaughter Ericka. I simply marvel at this drug. Have even went so far as...
I have been searching for your website to thank you. My name is Tammy and my son is Clayton, 4. My son was born on time. 13 hours into his new life he turned...
Tammy, I'm so glad you are on your way to the NIH! You'll be amazed at the results! Are you staying at the children's inn? We will be there next Thursday,...
Hello to all, My name is Fran Bulone and I have a 6 year old son Joseph. Joseph had a tentative Diagnosis of PFAPA until recently. I run a PFAPA yahoo site for...
Hello everyone, I just got a blood test back for Miko back and thought I'd share the good news. For the first time ever his CRP and ESR were in the normal...
Karen, how wonderful the hear that Miko is doing so well on Anakinra!! and that quick. Your description where exactly the same as with our Eline (almost 13...
Hi Karen, that is good news, we are due to start the trial tomorrow with charlie at great ormond st, all i read is positive so lets hope it is positive for...
Hi Karen, My experience was relly good, and Miko did just fine. He saw inprovements within 24 hrs (skin) and it did not seem to slow him down or have any...
I was invited to the 4th FMF conference this past November and what an eye opener to all the inflammatory disease out there. I even found out that Shar-Pai...
that is great, im so pleased for you all, what a difference it must be making to your lives, i feel very mixed about tomorrow, as charlie is a mild case of...
Dear Fran, Welcome to the site! My name is Karen Durrant, and have a son with NOMID, and am also an RN! (actually, you are probably #7 or 8 of the moms that...
Hello to all our old friends and welcome to all the new ones. Glad you found our site. Thanks again to Kate and John. I thought I would give a quick rundown...
Hello Michele, I am quite certain that our daughter and grandaughter will be at NIH sometime the first part of January. I think that she said the 4th. I will...
Karen, Kate and John and all members, Thanks for the warm welcome and information. Karen... Having been the moderator and owner of the PFAPA group... I too ...
I will have to find out the specific genes but the doctor said Clay had two mutated genes for HIDS. He said most children become symtomatic as a teenager....
Hi, Fran I am thankful to you. I go between your website, this one and the Traps site. Clay has HIDS but the symptoms and parents trials seem to be similar. ...
Hi. My name is Jennifer Earnhart and I am a new Mom to the group. I have been reading your posts for several weeks now and decided it was time to join in. My 8...
Hi Jennifer, good to have you on board, I am amazed how anybody with these diseases even manages to get out of bed, My son Alex has NOMID and is very affected....
Hi everyone, We started charlie on the anakinra on thurs last week so he has now had 3 jabs. I just wanted to post this as we have seen no change in charlie...
Hello all the new and old NOMID families. When I received this card from a friend, I thought all the children might enjoy clicking on the various objects to...
Hi, I wrote you a little note a while ago #797 just to say thank you. If you have a chance to read it, it is a brief history of Clay. We are seeing Dr...
Hi Jan, Luckily for us, Alex was never discontinued from the drug, I wonder if he would have had another PE . I feel so sorry for the children who had to go...
Hi there, Yes, charlie was and still is on 5ml steriods and 3 colchicine tabs a day, his appetite has also improved and he is sleeping fine, but even this...
Hi Tammy, I was curious as to what is HIDS? I'm fairly new to the NOMID family, so I was just curious??? Thanks! Dori When will you be at the NIH, we'll be...
Welcome to the group! My name is Dori, and our little angel is Kayla. She just turned two on the 6th of November. We got the diagnosis of NOMID this past...
We give Kayla the Anakinra everyday, I'm wondering why only three injections since last Thursday? From what the doctors said, even if we skip ONE day, her...
It is hyperimmuloglobin D. It is considered a periodic fever. It was once thought he had TRAPS but the paperwork came back that it was infact HIDS. It has...
Dear Karen Moore, and All, Wow, welcome to all the new people! I have not had any time to check my e-mail in days, and I enjoyed reading all the postings....
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