Ketogenic diet?

Just a note to say that Sam’s doctors are looking into the possibility of putting him on a special diet which has been proven to help epilepsy.

I’ve nicked this from Wikipedia:

The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. 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. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.

As Sam has a gastrostomy and is tube fed it is much more straight fed then if he ate normally as there is a special made up Ketogenic formula feed available (sounds bit of a nightmare if you eat properly).

The one downside is that it will mean Samuel has to have a short stay in hospital – should only be a few days – just while he starts the new diet. I’m a bit nervous about that as the last time he was in hospital the three of us caught a bad tummy bug, but if there is a chance that it could help him then we aren’t going to hold back.

So watch this space.

UPDATE: We may be starting the diet during the first week of April (2012). Fingers croseed.

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8 thoughts on “Ketogenic diet?

  1. Liam’s digestion has always been such a difficult issue so far that we haven’t given much thought to the Ketogenic diet . . .yet. Who knows what therapies we’ll try.in the future. I’ve heard good things about its results.

    Good luck you guys. We’ll be watching this space for updates.

    Here’s hoping that your stay is short and sweet.

    • Sam’s neurologist seems pretty confident of when it has worked in the past. Problem is, well let’s just say Sam’s bowels can be a bit changeable and I’m wondering if that might scupper him starting this new diet.

      Fingers crossed that we can go on it (well he can go on it, my diet is fine!) as I’m keen for him to try anything that might help.

  2. I certainly hope that you’ll be able to try this diet. I have two children that have been on the diet for fourteen plus years and despite the fussyness of the meal prep and monitoring of ketones etc it has worked wonders for them. My guys were part of a pilot program here in Toronto and it was recommended they come off the diet after two years. Two years came and went and we fought to keep them on it. We felt that Quality of life outweighed quantity and although they are not totally seizure free they are in a far better state. The difficulty I am facing now is that there are no facilities to follow up now that they both have become adults as we need to have a neurologist, nurse and dietician on board with us AND on board with the diet. Any way, best wishes for success and I look forward to hearing how it goes!

    • Thanks Carl. I’ve only heard positive stories so far about the diet, so I’m really very keen to get Sam on to it. I’ve had to remind myself a few times though that it isn’t a cure nor is it guaranteed to work. But if it can make just a small difference to Sam, that would be absolutely amazing! Will keep the blog updated with how we get on. Hoping to start early April. Fingers crossed! x

  3. Pingback: A sign? | Tricky Customer

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