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Worried uk
08-10-2011, 08:22 PM
Our 13 week old grandson has recently been diagnosed with this condition, it is a very rare condition affecting only 84 other people in the world, does anyone have any advice, information or know of any other people with this condition that may be able to help us.

basewatson
08-11-2011, 06:35 AM
Hi,
we are from the UK also, our son was diagnosed with Glut1 last year, he is aged 7.

Your grandson is very lucky that he has been diagnosed so early.

Take care
Stefanie

Worried uk
08-11-2011, 02:44 PM
Thank you for your kind reply we are still waiting for final confirmation from Germany of jamies condition but the rvi hospital ( Newcastle ) consultant due to all the test results so far is sure Jamie has glut 1. My daughter Stephanie is using the ketogenic diet which I understand has the best results for helping people with gl1. we are still learning day by day and I'm sure this will be the case for years to come, if you would like to we could possibly pass on information, updates from time to time about what has worked and what has not. Once again thank you and best wishes to you and you family.
Stephanie, Jamie and grandparent

basewatson
08-11-2011, 03:23 PM
Hi

Unfortunately for us Adam was not diagnosed until aged 6 so 'damage' or starvation of fuel for the brain had already been done in these early years. Getting a diagnosis so early means that you are preventing any damage being done which is fantastic!! In saying that there have been many improvements since starting the diet a year ago.

The diet is tough but I suppose for Glut1 it is slightly easier as the diet is a fuel source for the brain rather than a seizure control.

Take care
Stefanie