hello. is alice giong to have and spinal tap done .I thank that why i have to stay in the hospital .I have to have one done .I don't do very well with them...
Hi Becky,We are leaving for the NIH this sunday. We are scheduled Feb. 3, for the week. I don't think we see each other, unless you come sooner than...
Hi Becky, Yes, Alice is having a lumbar puncture on Wednesday (Feb 20) at 12:45. When is yours? She has not had any horrible problems in the past. I hope...
Hi Sherri, We have not met yet, but Isaac and I will be there the 6th - 9th.? It would be great to meet you and Miranda.? I always read the posts and know you...
Camille,Mine is on Tuesday at 2 o'clock and my daughters is on wedsday at 11 o'clock.I hope it goes good for alice too.becky Terry & Camille Lieffers...
Kathe,Thanks so much.ihope one of these times we can meet i have meet alot of nomid kids .I hope every thing goes good for Isaac to.becky kathebarch@......
Hello everyone. I hope all are well. Look likes I'll be attending the FMF Conference in Rome, Italy in April! If anyone has ideas of lower cost, safe places...
Doralia and Kayla Joseph and I will be at the Inn on the 16th of March. We will be there until Wed. Feel free to look us up. Fran Fran A Bulone RN Nurse...
Dear Dorelia, That is exciting, what a great experience! It is nice to know someone will be there from the NOMID community. Sorry, I don't know to much about...
Hi Dorelia, what a wonderful experience to be invited to the FMF meeting. I was invited to the very first one in Bethesda two years ago to speak to the doctors...
great! looking fwd to it! Dorelia Rivera Martinez "There are risks and costs to a program of action, but they are far less than the long-range risks and costs...
Dear Dorelia, A good friend from work gave me this info you might find helpful! Regards, Karen A ... Hostels: http://www.freedom-traveller.it/index.htm near...
Dear Dori and everyone interested, I am going with Seth and little Lucas to the NIH next week, Feb 24-29th, is anyone going to be there? In case anyone else...
Hi kate and everyone,I'm having terrible trouble trying to contact you/post a message,My Son,aged 2 and a half was diagnosed with CINCA just in the last...
Hi Aisling, thank you for your post and I admire your strength at this challenge. With regards to the NIH I can only say that it has been the life safer for my...
Dear Dorelia I would take him to the NIH as soon as possible, we have done so for a couple of years now and they are very professional and the hospital is one...
Hi Aisling, Im very sorry to too read about your beautiful son Jack who has this stuggle every day, hopefully now he has been diagnosed it will get slightly...
Hi Karen,thanks for your reply,it is much appreciated,I will see if my doctors will speak to Dr Woo.Last May when Jack was in ICU We met a Professor Cant,an...
Hi there Colin,I think that your message was probably meant for me, Aisling,Jack's mum.Maybe when you return home to the UK I might be able to phone you....
Karen, Got your Christmas card. Very cute. Thanks everyone for all of your work on the NOMID foundation. I think it is great that those of us who are dealing...
Hello to all, We got back from the nih on saturday night.tiffanie is ging so good thay can't beleave it and either can i. All of her bloood work is normal and...
Hi to everyone, and espeacially Jan and colin maira and kathe, i am so sorry i havent posted since we returned from the NIH but i have been snowed under with...
Hi Aisling and Micahel, I have read your post and cannot say how sorry i am for your troubles To deal with so many problems in one little child. We also have...
Thanks so much Lisa,I appreciate everyone's kindness and advice.Jack also has no mutation but has been clinically diagnosed,Its awful when you don't know for...
Hallo an alle da draussen, Unsere Tochter Aylin geb. am 21.12.2005 leidet an dem cinca Syndrom. Ich habe mich hier eingeloggt um erfahrungen mit der krankheit ...
Grüße dir, Es tut mich Leit dass Ihren Tochter Aylin auch CINCA hat! Aber ich hoffe Sie werden im Heutige Zeit gut betreut und natuurlich sollten unsere...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
