According to the Epilepsy Society, epilepsy affects at least 300,000 people in the UK - 60,000 of these people are children under the age of 16. Epilepsy affects 1 in every 100 children.
It is the most common serious neurological condition in the world and can affect anyone at any time in their life - it has no respect for age, sex, race or social class.
Seizures tend to develop in childhood or by late adolescence, but the likelihood of developing epilepsy rises again after the age of 65.
One in twenty people will have a single seizure sometime in their life.
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> The Ketogenic Diet
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The Daisyometer shows how much we have raised so far to keep our Daisy Garland Ketogenic Dietitians in place for a total of 3 years at the Royal Hospital for Sick Children, Edinburgh.
The Ketogenic Diet
by Sara and David Garland
Our Experience Of The Ketogenic Diet
We truly believe that the ketogenic diet prolonged Daisy's life, rescued us as a family, and as Daisy's mum, saved my sanity! Medication failed to be effective for Daisy and the ketogenic diet was the miracle we had been praying for. We cannot recommend it highly enough for children with difficult to control epilepsy.
'First Do No Harm' *
We discovered the diet at the end of 1998 when we were given the film 'First Do No Harm'*. Subsequently, a friend in Canada sent us the book 'An Introduction to The Ketogenic Diet'. On the 18th of January 2000, when Daisy was just 18 months old we were admitted to hospital to start the ketogenic diet. The diet worked so well that Daisy was drug free by the end of July 2000.
* Please contact us if you would like a free copy of this DVD
6 Months Seizure Free
Within days of starting the ketogenic diet Daisy's seizures reduced in both frequency and severity. To follow this storyline further, please refer to ‘Daisy’s Story’ on this website.
The Ketogenic Diet
The ketogenic diet is a rigid, mathematically calculated, doctor-supervised diet, which alters the body's chemistry by simulating the metabolism of a fasting body. It is a diet high in fat and low in protein and carbohydrate and is formulated to sustain the state of ketosis within the body.
Ketosis occurs when the body principally burns fat instead of the more common energy source, carbohydrate. Ketones (the ash or residue left after the fat is burned) are concentrated in the blood and inhibit seizures, although exactly how is unknown.
When a child starts the diet the ratio of fat to protein and carbohydrate combined are usually set at 4:1. Approximately 90% of total calories are derived from fat, usually in the form of butter, oil or cream.
Named after the ketone bodies excreted in the urine during ketosis, the ketogenic diet has been around since the 1920s. It was originally developed at the Mayo Clinic and Johns Hopkins University Hospital (Baltimore, USA) but unfortunately, as anticonvulsants drifted onto the market in the 1940s and 1950s, the ketogenic diet fell into disuse.
The diet is usually started in hospital, under the supervision of a neurologist, and is devised individually by a trained dietitian to fit the age, height, weight and metabolism of each child. Calculating the ketogenic diet is three parts science and one part art. The art part is a combination of common sense, empathy, and intuition. There is no promise that the diet will be easy initially, but if it works - if it works - it becomes not only tolerable, but absolutely amazing.
Please note that the ketogenic diet also shows promise for treating Alzheimer's, Parkinson's, autism, depression, migraines and cancer.
How Can The Ketogenic Diet Stop Or Reduce Seizures?
When reserves of glucose are depleted (for example, though fasting), the body can no longer use glucose to give it energy. This forces the body into a state of ketosis, burning fat quicker than it can be completely used, which results in a residue of ketones to build up in the blood, spilling over into the urine. When these ketones build up, they act as a kind of sedative, preventing the sudden disturbances in the electrical functioning of the brain that lead to seizure activity. For the diet to be successful, a child's body must be in a constant state of ketosis.
Starting The Diet
A child may start the diet in hospital, where they undergo a two or three day fast. Whilst in hospital they are carefully observed for any negative responses to the fasting, such as hypoglycemia (low blood sugar), dizziness, dehydration, and seizures. Most tolerate this period better than their parents would imagine. As soon as a child is passing a large amount of ketones in their urine, they have achieved the state of ketosis. The ketogenic diet is then introduced slowly, usually on a 4:1 ratio. This means that the child's diet will be made up of 4g of fat to every 1g of protein and carbohydrate combined. As the water content of a fasting body is lower than normal, the ketogenic diet may limit daily fluid intake.
Your dietitian will draw up an individual menu plan for your child to follow and will prescribe any vitamins and minerals required whilst following the ketogenic diet. There are two forms of the ketogenic diet: The Classic diet and the MCT version. Medicines, vitamins, toothpastes etc. must all be sugar free whilst your child is following the ketogenic diet.
Is The Diet Effective For All Children?
The ketogenic diet can be used for all types of seizures. Unlike anticonvulsant medication, it does not appear to have any adverse side effects. Even children with structural brain disorders such as microcephaly, hypoxic brain damage, prior strokes and developmental abnormalities have had success with the diet. However, the ketogenic diet must never be undertaken without the correct medical and nutritional supervision. The risks of an unsupervised diet can result in malnutrition, chemical imbalances, vitamin deficiencies and may even result in death. A number of children experience a reduction or cessation of seizures immediately upon fasting, whilst other children may take one to three months. Unlike many medications, the ketogenic diet does not appear to inhibit mental development. Even children who are developmentally delayed or retarded can benefit from the diet; when their seizures cease or are reduced, they often make development progress. Success of the diet requires strong determination, commitment and faith of the entire family.
The ketogenic diet improves control of seizures in nearly three-quarters of the children who try it. 20-30% may have their seizures completely controlled, and many become free of medication. Once the diet is weaned many children's seizures fail to return or are limited to just a few. The usual duration for a child to be on the ketogenic diet is 2 years.
Referral To A Ketogenic Dietitian
If you would like to try the ketogenic diet you should approach your GP, neurologist or paediatritian. However, due to lack of NHS funding this diet is not widely available in the UK. To date we have funded 14 Daisy Garland Ketogenic Dietitians all of whom work in NHS hospitals throughout the UK. We hope to increase this number in the coming months and years.
We wish you the very best of luck.
Daisy's Keto Cafe
Please click on this link to visit Daisy's Keto Cafe a Facebook event that has been set-up due to increased demand from the many families we support - in particular our new keto families and also those families still considering the diet.
Welcome to Daisy's Keto Cafe!
Please come in... the kettle's on and the biscuit tin is always full! :-)
Daisy's Cafe offers a relaxing place to meet and chat with families who are starting out on their keto journey as well as families whose children are already on the diet.
The Cafe has been set-up as an events page which will be refreshed every month.
The door's open, please feel free to step inside and take a seat! Let the chatting commence!
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