Hi all,just wondering if all the children have had a lumber puncture done?Jack is still in hospital,he is okay but I have a few concerns.I'm meeting Jack's...
Aisling, I think all of the kids in the study have had at least 1 LP. Most have had many, many, many. Be aware....for some reason NOMID kids get very bad...
Hi Aisling, We stopped counting after 20 lumbar punctures. Tom had a VP shunt put in 5 years ago that drains fluid from his brain into his abdomen when the...
Thanks Louise and Michelle,another question for ya...does anyone have Prof Pat Woo's other e-mail address,apparently she doesn't check the woopgosh one that...
Hello everyone, It again has been awhile since I have replied, but do read all the e-mails. Zach again has had a rough month and we increased his steroid...
Hi Jan,sorry to hear about Zach's problems over the last while.Thanks for your reply re the anakinra dose.Here in Ireland Jack is on the highest dose 2mg/kilo...
Hi Jan. Here is my thought on the anakinra and what we do in nursing. Before you empty your sterile anakinra syringe into the sterile vial, make sure you...
Jan, Hi. It was good to hear from you. I just thought I would comment about the Anakinra. I have been putting my Anakinra into sterile vials for over three ...
Thanks everyone for your concerns, thoughts and suggestions. Michele do you ever come up to St. Louis and go to the zoo, Grants Farm or any other place of...
Hi, I have been reading the posts but have had too much going on this week to post until now. Michelle, Thanks so much for the fundraiser that your family did...
Dear All, Dori is in Rome right now representing The NOMID Alliance, and will be presenting our poster and the CAPS brochures for distribution tomorrow at...
Michelle, Would you like me to send you the copy we have of the Childrens Inn Newsleter? Seth was so excited to see it! Last week, Seth had the opportunity to...
Karen, Thanks but that's ok. The Children's Inn sent us SEVERAL. Cool for Seth. I will be looking for Samson and Delilah here on the big screen. What fun!!...
Karen, I don't know how many brochures you have. I would like to give them to the pediatricians and allergy, immunology and derm in our town. We don't have a...
Karen, I also would like a few brochures to take to both children's hospitals in St. Louis. Would it be easy to make duplicates at Kinkos or an other place...
Hi Jan,. Yes, Alex takes one am and one pm. He is on 4mg/kg.. ( 0.56ml am and 0.45ml pm). I draw up 7 syringes into one vial and use that until it's empty. I...
Hi Karen,I'd like a few copies of the caps brochure too but was just going to download them...what do ya think??I don't want it to cost you anything,let me...
Congratulations to Seth & Kieran on their moments of fame. May there be many more! Karen can we have 20 - 25 brochures. If we need any more I will let you...
Dear All, There is no problem for us to send you the brochures that you need, because it is actually a better deal for us to send 20-30 and you to distribute...
Thanks Karen,Great to hear how Dori got on. Well if you don't mind sending me about ten copies that would be fab...................... here is my address- ...
Dear Karen, Many thanks for preparing this invaluable brochure. Please send 10 copies to Molly's doctor: Dr Ian Hamilton, Riverbank Surgery, Kilmun, Argyll...
Thanks to everyone requesting brochures, I will be getting them all in the mail this week. Sherri, I presume you have not moved since last year, right? I have...
Karen, I know we are low on funds, but have you looked into what it would cost to have a web designer build our site? Maybe we could pay periodically to have...
April 9, 2008 Greetings to Everyone, I am Jennifer Earnhart and I am a board member of the NOMID Alliance. I am also a patient at the NIH with the genetic...
Hi Jennifer, I'll try and see what I can organise for the Art fest/fundraiser.I've a good friend who is an artist who may be able to help us out,also my sister...
Jennifer, What part of Kentucky will the event be held again? I would like to invite doctors/nurse practitioners from the Cape Girardeau Missouri region. Do...
Michelle and all, Thanks so much for the support, and your family's dedication and amazing fundraising! I plan to try to get more grants, and address the need...
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