Hello to everybody! I want to give you an update on Jan and ask for your help again: Jan is on 6 mg Anakinra at the moment. We need to inject him twice. Since...
Dear Daniela, I am so glad to hear that a higher and morefrequent dose is helping your son to have less suffering on a daily basis. It sounds like he is still...
Hi Daniela, Sorry Jan is still getting sick. Actually I have wanted to sound in too as my son has had some recent issues. We may be dealing with an allergic...
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 all- I have been reading but haven't had much time -things are quite good with Jack at present-fingers crossed it stays like this!! He has never been home...
Hello again. It took a bit to answer you but my partner had an accident at work and had to stay in hospital. "devil doesn`t sleep" says a German idiom ... ...
Hi Karen I wonder if I can have more brochures. We will be at the NIH from the 19th for a week. Perhaps I can collect them there? I would also like to call...
Joan, Sorry that my earlier message on Monday never posted to you! I am not sure what happened, but I thought i hit the right button. I can send you as many...
Hello everyone,  I hope everyone had a nice Easter. I have been reading all the e-mails but have been dealing with Zach battling kidney stones. Poor guy,...
Jan, I am sorry to hear that Zach is battling kidney stones-how miserable! I hope he gets better soon. Do they think it is related to NOMID or calcium intake...
Hello all, I am sorry to hear about Zach's kidney stones as well. I hear that they are extremely painful and our kids suffer enough as it is. Johnny (my...
Just wanted to say sorry to hear about Zach's kidney stones- thinking of him and you all... Daniella how are things with your little man? hope he has had some...
... especially to Zach! I feel miserable when I think about all the pain he has already been through! Get better soon! Jan had his vaccination (pneumococcal,...
Daniela, My son would always react 2-3 days post-vaccinations, just like your son. The worst flare and rash was after his MMR (Measles, Mumps, Rubella), but he...
Watch Episode 1201 -" The Mysterious Syndrome called CAPS" on http://www.healthybodyhealthymind.com to learn more about CAPS. This is a really great show, and...
Hi Karen  Oh my god I have just watched it and you are right its brilliant, Camille its great to see Alice doing so well and looking so beautiful !!!  ...
Yes, Alice is on Anakinra but they would not let us mention it. I'm not rally sure why, we as parents want to shout it from the rooftops!! Camille ... From:...
Have fun! Thanks for sharing it to people. I know that they could not say the meds on the show, but the pts with FCAS are most likely on rilonacept (Dr...
thecamille, You and Alice were great! Loved all the home movies and pictures, I cried to see how beautiful Alice looked with her hair in the updo, was that...
That programme was brill-Alice & Camille you were fab!! Alice looks so gorgeous and delighted with herself,You must be sooo proud Camille...You didn't look...
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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