Hi karen i was just wondering how miko was getting on with the anakinra and have you heard from the NIH? is he feeling better now, i hope so, Fyn's flare-ups...
Lisa, It is funny that you wrote today, I was wondering how everyone was doing also and was intended to write. Has anyone heard from Kate or John? I wonder...
Dear Karen and Lisa, I wrote to you awhile ago about watching the temps and symptoms on the daily diary. They can up the dose of Anakinra, but they won't...
Dear Karen, and all others I checked extra with Eline's paediatrician on the flu vaccine.... Yes it's indeed allowed! because it does not have any live virus, ...
thanks for everyones feedback on the flu vaccine, we are going to give it a go and charlie is booked in next week, it is indeed a dead vaccine so hopefully...
We have just tried to get the Anakinra covered by our insurance company and were denied. They told us it was not covered by Medicare either. I know Durrants...
Dear Terry and Camille, Hello! I am so sad that you are having trouble with the medical insurance. I was very fortunate that our pediatrician put in the...
Hi Karen durrant, just one thing on inflamation of the eye, the condition you mention below plastic uveitis and iritis, do both eyes go red or just one and is...
Hello all! I have a question, actually two questions.. Is the NIH not going to cover the ANAKINRA anymore? Is that why some people have inquired about...
Dear Karen Moore, For Seth, his first signs were a bit of red/pink in the inner corner of the white of one of his his eyes. I thought at first that it was just...
Dear Dorelia, Happy birthday to Kayla! I will have to check out her website. We do not have to go back to the NIH until mid-January, but you will have a lot...
Hi Dore, The NIH is still supplying the Anakinra...we are just preparing for the future. We just returned from her 2 year check -up. Her tests and blood work...
Thanks to Camille & Karen for your replies, I got a little worried. We have good insurance, I'm just afraid that depending on the "mood" of the agent we'll...
Somehow I have lost all the contact information for NIH. My geneticist is wanting to contact them. Could someone please re-email those to me? Thank you so...
Dear Kathe, Nicole Plass: 1-301-594-2451 she is the nurse coordinating things for the NIH. Ana Gelabert: 1-301-451-9961 she is the Nurse Practicioner working...
FYI, Ana Gelabert no longer works at the NIH....too bad for us!! ... From: Karen Durrant To: nomidsyndrome@yahoogroups.com Sent: Tuesday, November 15, 2005...
HELLO EVIE AND DAVID CAMPBELL, AND KAREN MOORE WE WERE JUST WONDERING IF YOU WERE GOING TO GOSH ON FRIDAY THE 18TH AND IF YOU WANTED TO MEET UP AND HAVE A...
hi there, yes, we will be finished by midday hopefully appt at 11.15 so can meet up for a coffee, what do you think? ill send you my mobile no, or can meet in...
Dear Lisa and Colin, Evie, Molly and I are keen to meet you and Fynley on Friday. We will try to be in the waiting area before our 3.15 appointment, but...
DEAR KAREN I THINK EXCHANGING MOBILE NUMBERS WILL BE BEST MINE IS 07766318189 GIVE ME A TEX AND I WILL SAVE YOURS AND TEX YOU TOMORROW 2 LET YOU KNOW WHAT TIME...
Yes, I agree about Ana!! She didn't live near the NIH and I heard somedays she had an 1 1/2 hr. commute. She has small children and probably got too much....
i agree, mine is 07778 676626. see you tomorrow, will aim to meet you in restaurant about 12 - 12.30. karen colin smith <glastonbury_02@...> wrote: ...
Hi Colin and Lisa and David and Evie and everyone else. how did your appointments go yesterday, it was good to meet fynley sorry we couldnt stay longer to meet...
Hi Karen, I just wanted to comment about my experience so far, I know the confusion you feel and I have felt the same. Miko is now 21 months and has been on...
Karen Hi! My name is Dori and our daughter Kayla is 24 months! Anakinra simply is the best thing that has happened to her! She would wake up crying through...
I have read and continue to read the posts and was thinking, I wonder when was the first moment YOU (not doctors or otherwise)knew this was something BIG, ie....
Hello karen, we have only just returned from london and it was great to meet you and ian and meet charlie for the first time. I am so sorry that charlie got...
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