Hi, Would some of the members list the testing that would "usually" be done especially on the first visit at NIH (and later when monitoring the children).... I...
It will be great to see yu again karen, how are you getting on with the injections. How often do you go to gosh for a check up, has charlie had any bad side ...
obviously, we were too, no charlie has not had any site infections or side effects, his bloods are all in line, his SAA was tested originally at 687, it is...
I, too, would like to know, as we will be there for our first time as well. I know, Fran, that you have been there under a different study, but I am sure this...
Hi karen, i dont suppose you have the contact details for polly as i need to contact her and have no idea how to, an e-mail address or phone number. thanks...
ill call you later, I dont have pollys, only Julies and she only works wed and fridays, but i think i have a no for the department they should be able to find...
... done ... be over ... will have ... and "all" ... schedule ... want to ... correct ... Hi Fran, I happen to have my first original schedule, (I keep...
... as well. I know, Fran, that you have been there under a different study, but I am sure this will be new and confusing at first. Maybe we will have a...
Dear All, As far as schedules, I had nikki e-mail it to me before we went to the NIH this time, and I have always done this with the other people. I did not...
Sheri, Your posts are SO helpful to me. I am making a "list" and I will check it twice! LOL I contacted Nikki this morning via email and I asked for her in...
Fran i have the appointments that were put in place for fynley when he went over the the NIH for the NOMID protocol. On the monday he had an MRI and then a ...
Hi Karen D. and everyone I thought you had some interesting thoughts about the "phases" of the disease. I will just share with you and everyone a few of my...
Hi karen, thankyou for ringing it was great to hear from you, and have a good old natter. there is always so much to talk about and it is hard to remeber...
Lisa, Hi. I am not sure if we have corresponded before or not, but I have read a lot of your posts. I just wanted to wish you and your family the best as you...
Hi to everyone. I was just wondering if any of your children have dealt with any gastrointestinal problems? Hallie has struggled with this from about 12 months...
Dear Jennifer, Thanks first of all for such a wonderful letter about your life with this syndrome, and how it affects you and your daughter. It really was...
Dear Lisa, Thanks for talking to me last night, it is always fun, and I hope that the Anakinra works for your son. That would be amazing for him, and all of...
Clay has always had vomitting diarrhea with his febrile episodes. If he just had fever I think it would be a little more managable for us. We stay very...
Hi Tammy it sounds though Clay is really struggling at the moment and life is hard for all of you. It is very hard when you try something new and it doesnt...
Dear Friends & Family Members, You've been invited to visit Joseph Bulone's online CarePage. A personalized Web page, called a CarePage, has been created for...
Hello everyone Fyn started the anakinra on Friday, and within 12 hours has gone in to a bad flare-up has this happened to anyone else it is now day 4 and he is...
hi lisa, have you managed to get hold of prof woo or polly? i hope fyn is ok speak to you later karen xx colin smith <glastonbury_02@...> wrote: Hello...
Dear Lisa and Colin, I am so sorry that the Anakinra is making Fynley worse, instead of better. I am glad he is in the hosptial for this, and I think they had...
I'm so sorry to hear that Fynley has not responded well to the Anakinra. Zachary is negative to the gene, but has done extremely well on the Anakinra. When...
My heart aches for you Lisa. Having been there myself it is so hard to watch your child go through this day in and day out on a prayer that the next drug is...
Dear Lisa & Tammy, I'm so sorry that Anakinra has not been the answer for Fynley & Clay. I hope you both find some answers soon. Perhaps your guys will be the...
I also wanted to send you my love, it challenges your faith to see a child go through so much, and I know it is hard when you continued to face such big...
I really dont know what to say but thankyou for all your kind words and it seems the only time i can cry is when im posting to all my freinds who know what i ...
Hello to all, I am not sure if you will be able to find the rash attachment i sent in my last post, but you have to scrolldown, all the way down past all the...
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