[Ketogenic] 3 year old with Glut-1 Deficiency speaks her first words

[KarenB]

http://www.thisisleicestershire.co....tory-19443182-detail/story.html#axzz2XoTFX7RW

This little girl with seizures caused by Glut-1 Deficiency is seeing remarkable health improvement, and is beginning to speak! Fortunately, she was diagnosed early on.

 

[donnajane]

Hi Karen thought I should duplicate the post I put in re my sons speech therapy as the more I look into Glut-1 deficiency the more my eye's are opened.

Thank you so much for bringing this to my attention and Karen thank you so much for posting it. Don't know how I overlooked this post.
It was quite a weird sensation reading about Glut-1 deficiency as often out little man ticks a few boxes but there were just so many this time. There was only one thing out of the list which didn't fit and that was being born with normal head size then signs of delayed brain growth and development, our little man was born with a just below normal size head then suddenly had a large growth spike when his condition first became worse and he was rushed into the ED at 7 1/2 months it has had another growth spurt recently.
One thing reading about GLUT1 deficiency has made me think that his issue is definetly metabolic/genetic before it was always a strong suggestion but now after reading the information I am convinced it is metabolic even if it is not GLUT1 deficiency.
Thanks again. I think this forum is going to help his specialists work out his condition.

 

[KarenB]

http://www.coping-with-epilepsy.com...t-absence-seizures-associated-glut-1-a-19646/

Donnajane, this link gives more info on the connection between absence seizures (in children under 3) and Glut-1 deficiency, how the testing is done for this condition, and the treatment (the only treatment is the Ketogenic diet).