Alice is also going back to the NIH April 25. That will be for her 6 month check-up. It will be nice to meet you and Miranda. The Anakinra has been nothing less than a miracle for her. She is a new girl....more energy, no hives, no anemia, no headache, no pain......we couldn't ask for much more. As for infection and school......we did not keep her home at all. Terry and I both had colds several weeks ago and she did not get one. She really has not been sick since she has been on Anakinra. She has learned to prepare the medicine (we always check it) and she gives her own shot. For the 1st several weeks she had some injection site reaction, but not anymore.
Hope to also meet more NOMID families when we go back. Blessed Easter to all.
Hello everyone, We just got back this weekend from the NIH for Miranda's first treatment. Was that ever exciting.... NOT! I am very glad that she is on the...
Mintcreek
mintcrik@...
Apr 6, 2004 7:18 am
Hi Sherri and All, Alice is also going back to the NIH April 25. That will be for her 6 month check-up. It will be nice to meet you and Miranda. The...
Dear Sherri, Camille, Jacie and everyone, Sorry that I have not been able to write until today, but we were very busy at the NIH, then back into a ton of...
Please remove me from your mailing list. Lieven J. Van Riet ... From: sfokaren2003 [mailto:sfokaren2003@...] Sent: Monday, April 12, 2004 6:55 PM To:...
Hello everyone, We just got home from the NIH about 2 hours ago. This seem to be a less stressful trip than the previous ones. It sure is strange without Janet...
Jim&Sherri
mintcrik@...
Sep 24, 2004 4:01 am
Dear jim and Sherr and Everyone, I am sorry to hear that Miranda has been having problems, I was so hoping to hear good news! I also have to apologize that I...
Hello to all,    We are home fanaly after staying an extra 5 days because Tiffanie got an headache after her spinal tap. She is doing so well he bone are...
Becky, Seth is on the Canakinumab, the new drug that is a monoclonal antibody drug against IL-1, and has been on it since August 2008. He is in the study...
Glad that you are back home Becky, good job that the NIH pays for the flights, I had to stay longer the very first time I took Alex and the flight was not paid...
Wow, 4 shots a day? Kieran is now on 2. What a trooper Alex is! Actually, they are all troopers. Good to hear from you Kate. Hope you are well. ... From:...
Hi Michele, He's only on two of the anakinra, but then he takes two for heparin,( he has 5 stents holding up his IVC and SVC) He's been on the heparin for...
To All, I don't usually reply to these messages but I do read them all. I am Lee Parker's mom. He is on the Canakinumab study at NIH. He is doing well on...
To all,  Thanks so much everyone for writting back. My eyes are still red but ihavelost a lot of my vision from not hetting treated soon. also i have lost a...
Hi everyone, Â Â Â I am Mariah's mom, I too, always read posts, but hardly reply, but I have to shout out to Marie Parker. Your son and husband were at NIH...
Melissa, I am so glad that Johnny and Lee were able to help you. It does help knowing that others are dealing with this disease too. I remember when Lee was...
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