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ROBERTO ORIANO
mercredi 11 février 2004 11:38
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I would like to clear that AICARDI Syndrome and AICARDI-GOUTIERES Syndrome are two very different deseases. This website concerning AICARDI-GOUTIERES SYNDROME (AGS).
AGS is diagnosed by following parameters:
1) High levels of alpha interferon in spinal fluid.
2) Lymphocitosis (high level of white cells in spinal fluid)
3) Brain atrophy.
4) demyelination of the brain.
None AGS child has shown Cystis in the brain.
From the other part Aicardi Sindrome affects only females while AGS either males than females.
AGS is diagnosed by following parameters:
1) High levels of alpha interferon in spinal fluid.
2) Lymphocitosis (high level of white cells in spinal fluid)
3) Brain atrophy.
4) demyelination of the brain.
None AGS child has shown Cystis in the brain.
From the other part Aicardi Sindrome affects only females while AGS either males than females.
Raymond Wolfs
mardi 10 février 2004 07:58
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We have a 6 year old son. He has been diagnosed with AGS 4 years ago. He is totally dependent. No head or trunkbalance. In the beginning he suffered from gastro-enterologic problems: vomiting, dehydration. After he got omeprazole (Losec) it went better. His mental skills are improving a little each day, but his motor skills are the same since he was born. We hope you'll have the strength all to cope with every problem you child is suffering from. Let us hope for a cure someday.
Marilyn Pelletier
mercredi 4 février 2004 00:47
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We have a 27 year old daughter.Single who has a daughter with Aicardi Syndrom.Amber is our granddaughter's name born 4-3-00.I also work with 10 adults who are mentaly disabled..
Annie Bearskin
mardi 20 janvier 2004 19:53
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I am a Canadian Cree from the Eastern Coast of James Bay, Quebec CANADA. My daughter lost her baby daughter Makayla to a disease called Cree Leukoencepalopathy at the age of 10 months. Makayla was born with normal developments with subtle signs of slowness at 7 months when she developed her first cold. The cold never went away, with one infection after another until she lost all her abilities to grasp, sit, stand and hold her head. It is very difficult and painful to watch this period of the illness. My hope is that someday there will be a cure.
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