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Kim Stanford
samedi 13 août 2005 19:24
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I have tried to contact several people /professionals from this web site but to no avail. I have read through some notes from an annual meeting and have to say i was amazed to learn that some of the children have survived to be as old as 17-18yrs old. I was led to believe that he would not survive past his early years and to go home and make his time comfortable. i have not been supported with knowledge re AGS and only stumbled across this site a year ago. Which i have to say is fantastic for info and sharing experiences. My son is now 6 and was diagnosed by Prof.Aicardi(and relevant tests) in 1999. But at that time could write 8 lines on what was known about AGS. Please respond to: desmond_watson@blueyonder.co.uk
Kim Stanford
samedi 13 août 2005 19:12
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message to: june tonge
I have tried to respond to your messages but to no avail. if you would like me to try again please contact me on desmond_watson@blueyonder.co.uk (there is an under-score between the 1st 2 names) i wonder if this could be why i am not receiving any responses. Or leave another message on this web-site and i will reply.
I have tried to respond to your messages but to no avail. if you would like me to try again please contact me on desmond_watson@blueyonder.co.uk (there is an under-score between the 1st 2 names) i wonder if this could be why i am not receiving any responses. Or leave another message on this web-site and i will reply.
Maria Di Verde
lundi 4 juillet 2005 13:34
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I have a 2 year old daughter, Laura, who suffers from symptoms very similar to those of AGS but her illness still remains undiagnosed. Things weren't right from day 1 and at first the MRI showed an almost complete absence of the corpus callosum. Subsequent scans showed progressive brain atrophy and reduction of white matter.
Laura's overall conditon has been described as vegative with no motor or mental development whatsoever. We have never even seen her smile! We are struggling to effectively manage her symptoms which are severe vomiting and medication resistant epilepsy. Since the beginning of 2005 things have become more unstable with frequent bouts of unexplained fever. Does anyone else have the same problems with their child? Would like to hear from you.
Maria
Winterthur, Switzerland
Laura's overall conditon has been described as vegative with no motor or mental development whatsoever. We have never even seen her smile! We are struggling to effectively manage her symptoms which are severe vomiting and medication resistant epilepsy. Since the beginning of 2005 things have become more unstable with frequent bouts of unexplained fever. Does anyone else have the same problems with their child? Would like to hear from you.
Maria
Winterthur, Switzerland
michael
mercredi 29 juin 2005 05:17
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My daughter was recently diagnosed with a aicardi goutieres new phenotype. She does not have classic case of aicardi goutieres syndrome. Our neurologist made the diagnosis from columbia presbyterian in NYC, NY. Does anyone have any information pertaining to this new phenotype. We are currently in the process of a second opinion at Mt. Saini hospital in nyc NY. According to cases there are only 3 known cases in the world our daughter would be the fourth. We are also in need of some kind of support groups if there are any.We are still in disbelief that our little angel could have such a disease. our genetic backgrounds show nothing to the geneticists. Any information would help. We also would like to help others if we find out more information. Thank you.
ANA VALENCIA
mardi 28 juin 2005 00:54
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HOLA MI HIJA KARLA FUE DIANOSTICADA CON AGS ESTO ES NUEVO PARA MI MI HIJA TIENE UN ANO NUEVE MESES
389 entries in guestbook