Gästebuch
Mittwoch, 19. Oktober 2011 21:29
they say its is ASG
Hi to everybody, my little brother is 2 and we live in Germany. Today we had a conference with the doctors and they suppose, that he has ASG. But they still dont know for sure - at least they will make one last test to be sure that he has ASG. In six weeks we will have a meeting. Can you please advise what for questions we should ask? What is important to know about this sickness? Thank you
Olivia Bergman
Sonntag, 09. Oktober 2011 21:37
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My niece in NY
My niece, Fleura, was born August 6 of this year. She is the first child of my brother and his wife. My brother is almost entirely Italian in heritage, born in NY. (Our mother was born in Sicily). His wife is half Korean, half Polish, born in Korea. The wife has multiple sclerosis and had preeclampsia, so labor was long and scary. Everyone was relieved when Fleura seemed perfectly healthy. A couple days later the seizures started and she had test after test until the doctors at Albany Medical Center in NY diagnosed her with AGS. She is now on oral medication and was sent home October 6. Seizures continue, but are improved/controlled. She has an excellent appetite and still looks like a normal, beautiful girl. She responds to her parents' voices and other stimuli. Some of the nurses saw her smile a few times. The family lives in Ulster County, New York. (I am in Western North Carolina). I am interested in any resources out there. Thank you to everyone who contributes to this site.
- Olivia
- Olivia
Lauren
Samstag, 24. September 2011 01:39
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need help with son with AGS
Hi everyone. My son has been diagnosed with aicardi goutieres syndrome when he was born. Hes my first child and I dont know a whole lot about this syndrome. He has been having some feeding difficulties where he takes over an hour to drink a 4oz bottle. If someone could tell me some tips and more information about this syndrome. Thanks
June Tonge
Sonntag, 28. August 2011 20:22
Ross Beevers
Hello all ,i am ross beevers nan and am sorry i have not been intouch for a long time.
i hope you are all enjoying your holdays.
i am writing to tell you that ross is going to see Prof Y Crow he is now at st mary,s in manchester england and he is setting up a clinic there for our children with A G S .
ross as been ill for the last three months and i got in touch with prof crow and he randg me up,i cannot tell you how greatfull i was he is such a wonderfull dedicated to our children.and that is how i came to know about the clinic .i would like to encourage any of you that can to get in touch with him.god bless you all
June
i hope you are all enjoying your holdays.
i am writing to tell you that ross is going to see Prof Y Crow he is now at st mary,s in manchester england and he is setting up a clinic there for our children with A G S .
ross as been ill for the last three months and i got in touch with prof crow and he randg me up,i cannot tell you how greatfull i was he is such a wonderfull dedicated to our children.and that is how i came to know about the clinic .i would like to encourage any of you that can to get in touch with him.god bless you all
June
carolyn
Montag, 15. August 2011 09:44
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houston
If anyone would like to receive my book Over the Rainbow please contact me by email,its in memory of my 9 month old daughter who has since been diagnosed with Aicardia Goutieres (4)
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