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Sandie Lindemann
dimanche 19 novembre 2006 05:30
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My daughter Kirsten is 15 she was diagnosed with AGS at 9 months we have not had much help or information on AGS and thought her diagnoses might be wrong. We recently joined the research by Dr Crow in Leeds and Kirtsen's results came back she tested positive. I wanted to know the age of the oldest living person with AGS and are there any other cases reported in Australia?
icole Judge
samedi 4 novembre 2006 16:37
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My son Tucker Judge has been diagnosed with AGS from a clinical stand point. The testing of his spinal fluid was done, yet again not fully understood to be AGS. Tucker is 17 months old and I am finally strong enough to discuss this with other people going through the same thing. Please email me with any information or just want to share thoughts. Thank you Nicole Judge
Erika Gallagher
mercredi 20 septembre 2006 00:27
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Hi,my son Danny was diagnosed at the age of 4 months with AGS. To date I have spoken with Donna Miller and Kim Tayor, both of whom have been a great source of information. The past year and a half has been a rollercoaster of emotions as we try to "figure out" our little Danny. He has decreased his irritibility and can tolerate laying on his back and sitting in car seats and his feeder seat for longer periods of time. His weekly fevers have stopped. He drinks Pediasure and we do some feeding of baby food, mostly for oral stimulation. Danny can hold his head up when on his tummy, do visual tracking, and enjoys being tickled or moved around. He now has a belly laugh when he feels good. Danny cannot hold his head up in an upright position (however we are practicing this in his stander), roll over or sit up. Danny's sleep patterns are irregular with him sleeping 8 hours straight one night and waking up after 3 hours for 1 1/2 to 2 hours per night.I would like to speak to some other parents of children with AGS for support. Please e-mail me if you are interested. Thanks
EVELYN
jeudi 14 septembre 2006 22:35
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hi gabrielle i have a little sister with AGS. We also live in California.She is 2 years. If you want to contact me please do spaek spanish?
gabrielle bravo
mardi 12 septembre 2006 20:45
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Hello everyone! My name is Gabrielle and my son Cassius who is one and a half has been recently diagnosed with AGS. But he has only been diagnosed based on his symptoms not by having his spinal fluid tested. We are waiting to get his MRI done in the middle of October. We were trying for months to get his spinal fluid sent to France but our Drs are telling us that they cant legally send it due to the fact that there are laws here in the U S statint that if the out of country lab is not a research lab or a CLEA approved lab im guessing thats some sort of board , than they cant legally send it. I was just wondering if anyone was running into the same problems we were. But besides all that I was just writing to say that the first year of my sons life was so hard. But he has actually progressed a lot. He is a still developmentally maybe 4 mo. and the size of a 10 mo. old but he doesnt seem to be in pain all day like he used to he basically has spurts of it that dont even happen everyday. I was just hoping to connect with people that are going through the same thing my husband and I have been going through and maybe some new treatment ideas that we havent tried. Hoping to connect..... Gabrielle in California
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