Guestbook
Kim Stanford
Friday, 14 January 2005 00:10
This email address is being protected from spambots. You need JavaScript enabled to view it.
My son was diagnosed with Aicardi-Goutieres Syndrome in 1999, after a meeting with Prof.Aicardi and of course the usual testing. At that time there was little info regarding this syndrome and have given up looking. And by chance found this web page. My son will be 6yr old in Feb'05
Alona Anderson
Friday, 17 December 2004 05:48
This email address is being protected from spambots. You need JavaScript enabled to view it.
Hi,
Our Doctors think that my son "MAY" have AGS so they are contacting france to have the appropriate tests done. However they have told us very little about this. My son has many low grade fevers, high count of white cells in his spinal fluid, and some brain damage in his mri and ct scan. However he is progressing normally. They have no other idea of what is causing this and I am hoping that it is not AGS but anyone who has any idea please email and let me know, what to expect or not. We are very scared but the doctors say it doesn't seem to be getting worse. Any information would be GREATLY appreciated. Thank you, Alona
Our Doctors think that my son "MAY" have AGS so they are contacting france to have the appropriate tests done. However they have told us very little about this. My son has many low grade fevers, high count of white cells in his spinal fluid, and some brain damage in his mri and ct scan. However he is progressing normally. They have no other idea of what is causing this and I am hoping that it is not AGS but anyone who has any idea please email and let me know, what to expect or not. We are very scared but the doctors say it doesn't seem to be getting worse. Any information would be GREATLY appreciated. Thank you, Alona
NicoleChisholm
Wednesday, 17 November 2004 15:41
This email address is being protected from spambots. You need JavaScript enabled to view it.
We have two children who are undiagnosed who seem very similar to these children. We must suction them, and they cannot eat by mouth. They have seizures and are missing their corpus collosums.Both of our children are severely delayed and fragile. Anyone, please feel free to write us! Doug and Nicole
carlo
Friday, 22 October 2004 17:46
abbiamo una banbina di nome Vincenza nata il 6.5.2002 ed,a puttroppo questa sindrome.io sono il papa e mi farebbe piacere comunicare con altri genitori .
sechet pascale
Thursday, 30 September 2004 09:33
This email address is being protected from spambots. You need JavaScript enabled to view it.
j'ai un petit garcon de 7 ans alexis qui a le syndrome d'aicardi gouttieres et j'aimerais correspondre avec d'autres parents
389 entries in guestbook