Glucose Transpoter Type 1 Deficency Syndrome

Kimberley - posted on 05/15/2012 ( 2 moms have responded )

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Hi my daughter is 4 and has just been diagnosed with this I am looking for any other moms out their with children with this Syndrome if you could message me and let me know how things are this is very rare I was told but thought I would check thanks

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Kimberley - posted on 05/29/2012

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Thank you Amber for your post yes i have had to read and reserch alot on this Disorder it is amazing what is out thier and hard to find what is true or not they are going to start her on the Ketogenic Diet so that will help her seizures so now I am looking into that thanks for your response any support is great they say Trinity will have to be on the diet all her life but this disorder was only discovered about 12 years ago so it is pretty new

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