Dear All, Seth is still suffering from bad headaches daily, even on the increased Anakinra dose. He has been taking Motrin to help the pain, but nothing seems...
Take a deep breath. It is all going to be ok. Forgive me for not knowing...how old is Ashleigh and what are her main problems? It is probably a good thing...
I spoke to Nikki and she said for the first appointment they make the reservations at the Inn...Follow ups are up to us. I am a nervous wreck! We are just...
Shannon, I will be there at that time with my son Kieran. We too are staying at the Inn. I would love to meet you and talk to you. I have met several...
Shannon, We are at the NIH as we speak. You're visit to the NIH will be fine. Dr. Goldbach-Mansky and Nicky Plass (nurse) will be your main contacts here. You...
Hello, We are leaving for NIH on Saturday, Dec 2nd, and will head home on Wednesday, Dec 3rd. Just thought I would let you know in case anyone else is there...
Hi Everyone, I was wondering if anyone will be at the NIH around the 8th of January? I spoke to Dr. Goldbarch (sp?), and she said it would be a 3 or 4 day...
Dear Sherri and everyone else, It has been awhile since I have writtn anything, but did want to reply on my personal experiences with Zach regarding stomach,...
Just to be sure I relayed info correct, here is Raphaela's reply about the hepa vaccine; "Hepatitis A is an inactivated vaccine and can be given in ...
Hi Karen, im sorry to hear Seth is not doing so well, charlie is off the anakinra now and we are just waiting to hear what to do next with increased...
Hello everyone, Strange how when I get thinking of you all and then suddenly you all post. It is so strange, I e-mail Raphaela about the Hepatitis vaccine on...
hello to all I'm so sorry to her about seth headaches and the diamox to .I thake diamox for my headaches too.I have to take 1/4 tab 3 time a day and i'm also...
Hello to all, time is flying right by and I am so not ready for Christmas!! I have a question, if anyone can answer. After miranda had the stomach virus for 10...
Dear All, First of all, a belated Happy Thanksgiving, and an early Nerry Christmas, Happy Hanukkuh-Peace and Joy to all of you! I hope that Charlie is doing...
thanks everyone, charlie seems ok with it, they have prescribed an anti viral drug similar to zoviarax which ill collect later and give to him their main...
Hi Karen, Tom had a severe case of chicken pox at about 9 months of age. He was covered with spots and looked liked a chocolate crackle and used to rub his...
Hi everyone, Charlie has chicken pox, it seems very mild he only has about 8 spots on his tummy/back some in his hair and behind his ears and back of his neck....
Dear Sherri, I am so sorry to hear of your battles with the stomach bug/flu thing. I am glad that I have not yet experienced that one! However, we did go...
Hi Everyone, What a time we have had with this "flu" or stomach virus, which ever it is, it's horrible! Started last week with Jessi first, thursday night,...
... Miranda has been on anakinra for almost 3 years (january will be 3 years) I don't know where we would be without the NIH! Yeah, it's a hassle going all the...
Karen, Yes, Isaac is on a monthly IV of the anti TNF (tumor necrosis factor) called Infliximab (or Remicade). I think there is a drug that is a weekly...
Maybe I shouldn't have been so eager to say Anakinra works so well. I'm aware that it hasn't worked the same on everyone. I just pray that for those that it...
thanks hope the puppy is not too much trouble, charlie was taken off of the anakinra last friday and in the meantime they have just increased his prednisolone...
Karen, So sorry I did not get back to you sooner. In all our craziness, we decided to add a puppy to our lives so I am not on the computer too often. Isaac's...
just seen prof woo at great ormond st and we are off of the anakinra as of now, but upping his prednisolone as a holding method until she decides what to try...
It's been a while since we've written. Hope everyone is doing well. Shannon, The Anakinra is a "miracle drug", I'm sure your experience will be hard at first....
Kathe, thanks for your mail, I just dont understand how the children are all so different but being given very similar treatment, how is issac I hope he is...
Hi Shannon, Congrats! getting the approval is a huge step! Michael has been on anakinra just a little over a year now and I have nothing but good to say, for...
Karen, The anakinra did not work for Isaac either. He is currently on once a month IV dose of Infliximab (Remicade), once a week shot of Methotrexate, daily...
Hi there, I think it depends on the child as to how they react to the anakinra most of the time it is fantastic and works within 24 hours, it however doesnt...
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