Gästebuch
Guest
Mittwoch, 21. Oktober 2009 15:59
Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
aicardi
oi sou mae de um bebe de 2 meses que tem a sindrome de aiccardi so que moro numa cidade pequena que nao tem recursos para minha filha alguns medicos nunca ouviram falar dessa sindrome entao peço juda de voces minha filha esta tomando 16 gotas do fenobarbital e 1 complimido e meio de topiramato mais ela ainda da muitas crises gostaria de trocar informaçoes sobre exames que ela tem de fazer para se constatar a sindrome mesmo porque agte hoje ela so fez resonancia magnetica e eu tenho duvidas se ela tem mesmo essa sindrome obrigado que Deus abeçoe voces
Guest
Dienstag, 20. Oktober 2009 23:11
How many people have been diagnosed with AGS ever? How many people are there alive in the world today with this syndrome?
Mustafa
Dienstag, 20. Oktober 2009 20:02
Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
Re: Low body temprature
Dear Bodil,
Unfortunately I hear never before in AGS about this problem with low body temprature.
Maybe other families knows something about this problem.
Unfortunately I hear never before in AGS about this problem with low body temprature.
Maybe other families knows something about this problem.
Bodil Joensen
Sonntag, 18. Oktober 2009 22:45
Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
Low body temprature
Hi. My name is Bodil Joensen. I live in the Faroe Island. In September we were told that our son has AGS. His name is Kjartan and is 8 ½ years old. He has a little sister, she is 3 ½ years old, and a little brother, he is 9 months old. They don´t have AGS. In August 2007, when I was in 8 month in pregnancy, we lost a little girl, she had AGS. Kjartan has often too low bodytemprature between 33-36 degree Celsius. When he was younger he had a normal bodytemprature. Is there anyone who knows anything about that. This last years his bodytempurature is getting lower and lower. We have tried many things. No one knows anything about too low bodytemprature. Thanks
Guest
Freitag, 09. Oktober 2009 22:01
Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
Trish Cobb
Hi
It wasn't until the death of my granddaugter, Serenity, that the doctor's said she had Aicardi-Goutieres. I would love to know more about the disease.
It wasn't until the death of my granddaugter, Serenity, that the doctor's said she had Aicardi-Goutieres. I would love to know more about the disease.
389 Einträge im Gästebuch