Ketogenic Diet

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Niamh's Journey

What is the Ketogenic Diet?

The ketogenic diet is a high fat, adequate protein, low carbohydrate diet, primarily used to treat difficult-to-control (refractory) epilepsy in children.

The diet mimics aspects of starvation by forcing the body to burn fat rather than carbohydrate.

Normally, the carbohydrates in food are converted into glucose, which is then transported around the body and is particularly important in fuelling the brain. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. When the body produces ketone bodies—a state known as ketosis—this has an anticonvulsant effect.

Why we think the diet worked for Niamh?

By all accounts, the response that Niamh showed when she went on the Ketogenic diet was truly astounding.
Our little girl went from having over 100 seizures a day to zero in the 6 weeks since commencing the diet.

We think there are 2 possible reasons why this might have happened:

1. Niamh's underlying genetic problem was somewhere within her carbohydrate metabolic pathway and by by-passing this pathway and allowing her brain to get energy by another means (through fat metabolism) she was able to get sufficient fuel to her brain to stop her seizures.

2. The presence of ketones in her body had an anti-epileptic effect (which is still not widely understood)

Controversially, we also believe that the fact we started the diet and removed all her anti-convulsant drugs gave her the best chance at success. We believed that many of the drugs Niamh was on to help her seizures, actually made her seizures worse, and changed their pattern and severity. (although apparently there is no medical evidence to suggest this is or isn't the case).
I am aware that a few other children with MPEI have tried the ketogenic diet (with good effect) however none other than Niamh that I am aware of, became seizure free on the diet - but neither did any of them stop their anti-convulsant drugs at the same time.

I am not suggesting what we did would be right for every child's situation but our decision to stop all her drugs when we started the diet was an informed one, after weighing up the risks and accepting the possible outcomes. Niamh was still having over 100 seizures a day whilst on a combination of anti-convulsant drugs at this time, so in our opinion the drugs were having no beneficial effect for her and she had no quality of life.

450px-Measuring_Ketocal

Negative Aspects

- Niamh did not tolerate the high fat content of the diet very well as she had severe underlying gastric problems. This meant she regularly vomited and experienced
  gastric discomfort whilst on the diet. We tried to reduce the symptoms of this discomfort using methods described on the symptoms page in the same way as if she
  was on regular feed.
  We also tried the modular version of the classical ketogenic diet where each of the components were added separately to make it easier for her to digest.

  Eventually this poor tolerance led to slow weight gain and was ultimately the reason she came off the diet after nearly 3 years. Weight loss in children on the
  ketogenic diet is very rare but does happen.

- She had the tendency to get overly ketotic and regularly had to be rescued from keto-acidosis with fresh orange juice. This was not so much of a problem, as we
  quickly learned to identify the signs in her - retching, cold but clammy, rapid breathing and unresponsive. Once she had sugar back on board she was good as new.

Ketone Monitoring

- We had to weight Niamh weekly to adjust her calorie intake per Kg for optimum seizure control.

Urine Ketone Testing

Blood KetoneTesting

Ketostix

- We used to monitor her urine ketones with every nappy change (cotton wool in nappy) to check she was within safe range.

- We carried around a blood ketone monitor to double check any abnormal urine results or to spot check her if she started doing anything out of the ordinary.

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