Hello everybody! I`m new at this site ... I`m from Austria and my son Jan was diagnosed NOMID. He is 6 1/2 months and started the Anakinra-therapy about 1 1/2...
Hi Daniela, Â My son charlie is 6 years old and has been diagnosed since he was 1 year old, first of all they started him on steriods at 2, and he has a...
Hi Daniela, I may be completly off base, but I know that out side north america they tend to be conservative with the dosing of anakinra. My son is 4 years...
Hey there Daniela and the two Karens- I have been chatting with Daniela via e-mail and her little baby at only 6 and a half months old is on 0.96 mls which is...
Hi all  yes thats right 2ml per kilo, i put about 0.26mg into the syringe well just over 3 but once i push it up its about that, it is quite a low dose and...
hi daniela when i first saw this i thought you were from Australia like Tom! My brother and his family live in London at the moment and just spent xmas skiing...
Hello and welcome to the group Daniela, Thanks to Karen Moore for communicating with you, Daniela, and yes, that is good amount of anakinra, but there are...
Hi Daniela - My little girl is 3 and a half now and was diagnosed at 7 months and started Anakinra at 9 months. She started on prednisolone at 7 months and...
Thanks to everybody! It`s great to know that there are people who understand and can give us precious advices ... Jan is the first NOMID child in Austria which...
Hello Daniela,  I am so sorry to hear about your little Jan going through so much pain. My son, Zachary is now 24 years old and was not diagnosed with...
Daniela, I am not sure if you are looking for doctors interested in autoinflammatory disorders in Austria, but this link has a worldwide list of members from...
Ein schonen Guten Morgen Daniela, Leider kenne ich keine Familien in Österreich, aber jedoch aus Schweiz und Deutschland. Sogar haben wir uns mal mit Familien...
Hi All  Hope you are well, im just having a bit of a worry about taking charlie and his brother to Euro disney in May  Have any of you all been ???? ...
Karen  We went last year and the hotel will keep it for you in a fridge just make sure you label it clearly.  Dont panic you will be okay.  Regards Colin...
Tom went in July last year with his cousins and he did the same. Following Karen Durrant's advice, we had a copy of the drs letter laminated, and attached that...
Thanks, will go and book it in the morning otherwise at this rate charlie will never leave the country !!! thanks to you both, I promise to try to chill ,...
Tom was 14 when he went, and enjoyed it. We had been to the theme parks on the gold coast in australia earlier that year, (sea world, wet& wild, movieworld),...
thanks, all booked cant wait !! will send you some photos after we get back...all tips gratefully received if you have any more best and bits to avoid let me...
i'm sure you & charlie will have fun karen. from my experience with the theme parks here- get there nice and early, plan a bit of an itinery for the day on...
Karen  Do you have disabled badges? If so, when you enter the Disney Park go to the left hand side to the Town Hall. Show them your badges and ask for...
Hello again! Last week was rather rough for our little baby. Jan has had flares almost every day. He is often in pain. Sleeping is a big issue! Actually he...
Oh Daniel, I'm so sorry to hear it's not stable and Jan is'having pain and flair-ups. In the past we faced and thought that it would be better to comfore...
thinking of you & jan, daniella. hope the drs get the right mix for hime soon Louise ... From: daniela.spalt To: nomidsyndrome@yahoogroups.com Sent: Wednesday,...
Dear Daniela, I am so sorry to hear how much your little boy is suffering, and that the anakinra is not covering him enough must be so concerning. I hope you...
Dear Daniela  So sorry to hear of your pain, it sound's so familiar to what we went through a number of years ago with Tilly.  Excuse my ignorance but is...
Daniela- I believe that the doctors at the NIH were cautious to taper off the pred because she had been on it for a long time, and they wanted to achieve the...
Thanks for your prayers, I hope they are heard! I will never understand why our children have to suffer so much. People say there is a reasen for everything...
Hi, Just a quick update and a tip for anyone who is on anakinera and is traveling... My name is Stephanie, and I am 27 years old. I have been in the ACZ-885...
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