Hi Karen, Alex is on 4mg/kg and taking it twice a day. It's working great on everything else but the CNS pressure still up and this last visit he had lost 15db...
Hi Kate, Thanks for your mail, do you think without the anakinra the pressure would be higher and it is helping with everything else or do you think the level...
Hi Karen, I have a feeling Charlie has not been on a strong enough dose, He is just about to be put up to just under 2mg per kilo so with his body weight and...
Dear Karen Moore and everyone, I am glad to hear that Charlie's labs are looking better, but it is too bad the rash is not reducing. I think that was the case...
Hello everyone, In response to the issue with doses, Michael is now on .34 (really sorry I have no idea what that is per kilo and what not, I am one of the few...
Hello to all, I have finally gotten this email thing worked out! Apparentley I have been "bouncing", so I have re-activated the account. Things are ok here, we...
hello eveone my daughter and i are going back to the nih in nov.7th - 10th is anyone going at thet time let me know .becky Karen <karenatkinson@...>...
Hi everyone, Just wanted to share a link to a write-up on NOMID a friend sent. Title: Arthritis Drug Helps Debilitating Inflammatory Disease Web Address : ...
Hi Becky. Hallie and I will be at the NIH October 24th-27th. I hope that we will eventually get to meet someday. Maybe, there will be some way to coordinate...
Hello to all, We are getting packed right now to leave in the morning. Anyone going this week??? I talked with Matty last night, but forgot to ask her. I will...
We will be there Tuesday - Friday. I do not write in very often anymore. Isaac does not have NOMID, but is in the natural history protocol as he is certainly...
Hi, My name is Shannon and my daughter Ashleigh who is 16 months old has just recently been diagnosed with NOMID after months of tests and almost 15 months of...
Hi Shannon, My 2 1/2 y/o son Michael was diagnosed at about 19 months after struggling with his strange symptoms from birth. I think you will find great help...
hello . yeah jennifer i hope we can get together to .our next vist will be in feb. i dont know when yet hope you can be there .tiffanie is going back in nov....
Dear Everyone, Sorry I have not been able to write in awahile, but I have been reading the posts. Welcome Shannon, and please feel free to call me anytime if...
Hi Karen and all, Karen it is good to hear from you, you must be run off your feet. I am glad Seth is improving now, Michael also had some crazy stuff very...
Hi everyone, We are back, we got home saturday. It was a long trip, but something that cannot be avoided, as we all know. We left NIH august 2, and her spinal...
Hi Everyone, Ashleigh's doctor just moved up her 4 week appointment to this afternoon after getting back some preliminary blood work results...Her AST was 88,...
Hi Sherri, I am glad to see you got back OK, I was anxiously waiting to see you post. This is one of those times where no matter what I say, I can not even...
Hi everyone, The insurance company just approved the akanira for ashleigh today. The only problem now is that the medicine comes in prefilled syringes that...
Hi there, I think it depends on the child as to how they react to the anakinra most of the time it is fantastic and works within 24 hours, it however doesnt...
Karen, The anakinra did not work for Isaac either. He is currently on once a month IV dose of Infliximab (Remicade), once a week shot of Methotrexate, daily...
Hi Shannon, Congrats! getting the approval is a huge step! Michael has been on anakinra just a little over a year now and I have nothing but good to say, for...
Kathe, thanks for your mail, I just dont understand how the children are all so different but being given very similar treatment, how is issac I hope he is...
It's been a while since we've written. Hope everyone is doing well. Shannon, The Anakinra is a "miracle drug", I'm sure your experience will be hard at first....
just seen prof woo at great ormond st and we are off of the anakinra as of now, but upping his prednisolone as a holding method until she decides what to try...
Karen, So sorry I did not get back to you sooner. In all our craziness, we decided to add a puppy to our lives so I am not on the computer too often. Isaac's...
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