Well,just thought I'd let you know that Jack had his lumber puncture and a few other procedures done yesterday.It went well but alas the results of the LP...
... Hi Aisling, I am Sherri, Miranda's mom. Before Miranda was diagnosed with NOMID, Her fontanel was bulging. We went trip after trip to the emergency room,...
Hello to all! I know it has been too long since I've been here! Sorry!! :( Anyhow, Karen thank you so much for the brochures! I have handed all of mine out...
Hi Aisling Tom's pressure was high too. He did have abnormal cells but mainly the high pressures. At one stage we were having LPs every couple of weeks to...
Sherri, That is all really interesting)especially being a medical person). Let us know if the surgery helps. ... Anyhow, ... in ... we ... he ... her ... ...
I remember Dr. G telling us that ALL the NOMID kids had elevated pressures except my son. Interestingly, when his gene mutation was mapped they thought he was...
Aisling, Alex has very high pressures. The last LP at the NIH showed that Alex's pressure is so sensitive that loud noises and touch can make his pressure very...
Hi everyone,thanks for your replies!Does anyone remember a no for the pressures.I've heard it should be below 10 and Jack's is 44 as I already told you,can...
Hi Aisling, My husband remembers one of Tom's readings being 32 before the shunt, but I'm not sure if that was on medication (steroids/diamox) so there could...
Aisling, My son is almost 24 now, but from 18 months until he had a VP shunt placed his spinal fluid would shoot right out of the pedo gages. I remember...
-Hi Jan, i have just seen your post dated the 5th of april, I am so sorry i havent been more consitant with my e-mails but from the minute i got home my life...
Thanks for your post back karen, You have always been so kind to us and always concerend about Fyn's well being, and unknown diagnosis, yes it is obvious that...
Dear All, I apologize for being out of touch lately, due to life being crazier than normal, but I have shipped off all the latest requests for the CAPs...
Kate, I will send you the files later. I see that you have a different e-mail address now and , I had sent it to an old one, so maybe that is why you did not...
Hi Karen, My God you've been busy with everything going on with your boys!!Poor Seth,only being loyal to his big bro Ethan!Hope he has recovered by now.And...
Thanks Karen(again)for sending the second batch of brochures so quick!! Much Appreciated! Jack is still in hospital,waiting for the Nuero Consultant to return ...
Karen thanks for the reply. Could you send me 12 brochures that I can hand out. Do I need to send any money to you? In October, I will be doing the MS150 bike...
Aisling, We have a problem there and I,m not sure if John can fix it. We lost all out data when our computer crashed. Although I did get a recovery agency to...
Aisling, I hope Jack gets rid of the newest hospital bug, and stays off the oxygen! I cannot imagine what he has been through and your family too. Seth took...
Kate, I will be sending you brochures this week. What a great thing to do the MS ride-I have always wanted to do that. I will sponsor you too. What a great...
Hi everyone, Jack is home at last but got to go back in 2 weeks for another GA and and LP.The Docs are happy enough with the initial report of his mri and mrv...
Below you will see a letter dated April 9, 2008 regarding The NOMID Alliance fundraiser. Many of you are already aware of this event, but in the past several...
Dear Jennifer, I'm Aisling from Ireland,mother of Jack(age 3 in July) who has Down Syndrome and Cinca Syndrome.I know my sisters and friends are going to do...
Hi all, Jack had his second LP today and the pressure was still the same 44 so now Docs are talking about putting in a shunt in his spine to drain the ...
Take me and my group off of your group or I will inform yahoo. _____ From: nomidsyndrome@yahoogroups.com [mailto:nomidsyndrome@yahoogroups.com] On Behalf Of...
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.
