Hello Kate and all, I wanted to forward this to you regarding the hierchy at NIH with the nurses. I found out today the testing which was suppose to be...
Dear Fran, Kate and All, I am waiting to hear how Kate's visit to the NIH went before I take any actions on the Nikki issue. I am hoping that Alex's...
Hi, Fran,Karen and the group. our trip went well though Alex has a pineal cyst and abnormal leptomeningeal enhancement bilaterally near the vertex shown on MRI...
Hi Kate and everyone, Zach and I will be up to the NIH next Monday 9/11 though Friday. Originally, we were only suppose to be there from Wed. through Friday,...
Kate, Thanks for the information. I am happy to hear things went well... Is there a plan for Alex's new findings? Just wondering... I searched NIH site and...
hello all.tiffanie and i got back form the nih on the 24th our vist was ok tiffanie has 18 wite cells in the spinal fluded and we have to go back agian in nov....
Dear All, Kate, thanks so much for trying to get something done about Nikki, and I will be making contact with Claire Hastings soon. I am surprised at how...
Dear All, I have posted the newest research article and supplemnt from the New England Journal of Medicine on the www.nomidalliance.net website and am not sure...
Karen, It opened up for me also by right clicking and then save as. Thanks for all that you have done. I spoke to Dr.G. today. Zach and I are going up...
Hello to everyone. Becky, something you said in your last post caught my attention. You said that you were having shortness of breath and they were looking...
Jennifer, Hi My son Joseph has a CIAS1 mutation however he only has about 7 of the symptoms of NOMID and they have not labled him as NOMID. Instead he is...
jenifer the shortness of breath you talk about are the same way for me.i know how you feel thay come from no here .even when i'm talking i have to stop and...
jenifer the shortness of breath you talk about are the same way for me.i know how you feel thay come from no here .even when i'm talking i have to stop and...
Fran and Becky, Thank you for your replies. They were very helpful. Fran, Hallie and I are much like your son in that we do not fit what they call the...
Dear Jennifer, Becky, and Fran, and All, I recall Seth having a few terrible flares in his life, and he was having rapid heart rate and breathing, and would...
dear all When i was 9 years old i was in tha hospal with flude around my heart i was in the hospal for about 2 weeks in tell it went away.then 1 mouth later i...
Hi Everyone, I just posted a nice message (files section) I got, I thought you all could relate. Thinks have been a little crazy and I hav'nt had much time to...
Hi everyone, Well I hope you are all doing well, now that the cold is moving in I am finding time to get caught up with things inside. Stephen is back at...
Dea Anyone out there, How can we stop these incoherent alien writing postings from this one person? If they are posting spam, they must stop ASAP! If they...
I know it all looks a bit strange, I thought someone was just having a chat in another language silly me ! While Im here, what mg per pound or kilo are most...
Dear Karen, How is Charlie doing on the Anakinra? Is it helping? I hope so!Seth is on 2.5 mg per kilo, but he started at 1 per kilo the first month he was on...
Hi Karen, Alex is on 4mg/kg and taking it twice a day. It's working great on everything else but the CNS pressure still up and this last visit he had lost 15db...
Hi Kate, Thanks for your mail, do you think without the anakinra the pressure would be higher and it is helping with everything else or do you think the level...
Hi Karen, I have a feeling Charlie has not been on a strong enough dose, He is just about to be put up to just under 2mg per kilo so with his body weight and...
Dear Karen Moore and everyone, I am glad to hear that Charlie's labs are looking better, but it is too bad the rash is not reducing. I think that was the case...
Hello everyone, In response to the issue with doses, Michael is now on .34 (really sorry I have no idea what that is per kilo and what not, I am one of the few...
Hello to all, I have finally gotten this email thing worked out! Apparentley I have been "bouncing", so I have re-activated the account. Things are ok here, we...
hello eveone my daughter and i are going back to the nih in nov.7th - 10th is anyone going at thet time let me know .becky Karen <karenatkinson@...>...
Hi everyone, Just wanted to share a link to a write-up on NOMID a friend sent. Title: Arthritis Drug Helps Debilitating Inflammatory Disease Web Address : ...
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