Ketogenic Diet

Information from: http://www.milestonesforchildren.org/glut1.html

The Ketogenic Diet
The ketogenic diet is a very restrictive, calorie-limited, high fat diet. All food consumed is based on a ratio of fat to protein and carbohydrate combined, usually a 4:1 or 3:1 ratio, (3 or 4 grams of fat to 1 gram of protein and carbohydrate combined). No sugar is allowed and minimal carbohydrate is included. Each meal or snack is measured in grams and typically includes a small amount of protein, a tiny amount of a lower carbohydrate fruit or vegetable and a large amount of oil, butter, mayonnaise or heavy cream as the fat source. This diet is so precise and restrictive that children on it must avoid even topical ingredients that may have sugar sources or carbohydrate (examples are medications, toothpaste, lotions, sunscreen).

Strict compliance with this diet causes the body to produce ketones. Ketones are used by the brain as an alternate fuel source. The ketogenic diet usually helps with seizure control. But, it is currently unknown how much this diet may benefit the other symptoms of GLUT1 deficiency syndrome. Every child on this diet must be monitored to measure for adequate ketones. The best way to measure ketones is with a blood monitoring machine that requires pricking the child's finger. If ketones are too low, the child may have seizures or other symptoms of GLUT1 deficiency syndrome, and if ketones are too high, acidosis or other side effects can occur.

The ketogenic diet does not provide adequate nutrition. Children on the diet take various daily supplements to try to keep their bodies properly nourished and growing. Their blood, bodies and organs are carefully monitored by doctors to watch for and try to prevent potential problems caused by the diet. Some side effects that can occur while on this diet include kidney stones, high cholesterol, dehydration, slow growth or weight gain and bone fractures. The long term effects of the ketogenic diet on the body are not known. But, we do know that it helps children with GLUT1 deficiency syndrome while they wait for a cure.

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Charlie Foundation

I cannot say enough good things about Charlie Foundation.  The founder Jim Abrahams responded to an email from me with in 30 minutes and even followed up with a phone call within the hour, just to make sure I got his email.  He took time to respond to a mother's fears and concerns.  He helped me with information we will need for our insurance concerning the Ketogenic Diet.  Thank you Jim!


Jim wrote and directed the movie First Do No Harm with Meryl Streep
http://en.wikipedia.org/wiki/...First_Do_No_Harm