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.