The ketogenic diet is much more than a diet. It will only be successful if it is regarded as a serious medical intervention, and is managed with care and understanding. There are four key players in the the diet - your neurologist, your dietician, you and the keto kid.  Each of them has a role to play, and it is important that they understand what that should be.

The neurologist

The neurologist needs to be committed to the diet. This means that he must recognise that the diet is a medical treatment in which he should be actively involved. He should have at least as much knowledge about the operation and side effects of the diet as he would have about the anti-epileptic drugs that he uses. Ask him about the diet - does he know what the major side effects are? Does he know what deficiencies the diet can cause? Can he tell you why MCT oil is special? Does he know that the diet may amplify the effect of the anti-epileptic drugs currently being taken? Too many neurologists think the diet is something to be administered by a dietician, and that all they need to do is to prescribe the diet and leave the rest to the dietician. That is not good enough.

The dietician

The ketogenic diet is unlike any other. It demands total precision in terms of calculation and measurement of food. It is extreme in terms of the balance of fat, carbohydrate and protein. These are not things to which dieticians are normally accustomed. If you have a dietician with good training and experience in the ketogenic diet, that can be a wonderful asset. If you don't, then be warned, you may have problems.

These are the things your dietician should not be doing:

• Deciding on the type of diet and the ratio to be used. Your neurologist must have the understanding and competence to make these judgements. If he does not, then you have the wrong team.

• Designing individual meals for you. You know the food your child likes and you are the best person to manage the details of the diet.

The dietician does have an important role to play, and these are some of the things that your dietician should be doing:

• Advising you on the consequences of such an extreme change in the balance of food intake and the ways to manage such a high fat content.

• Advising you on the potential dietary deficiencies that will be caused by the ketogenic diet, and telling you what symptoms to look out for.

• Ensuring that you have a complete set of supplements to compensate for the deficiencies caused by the diet.

You

The diet will only work if you are totally committed to it. Your role is crucial, because you. are the one person who who monitors the operation of the diet on a daily basis. Its success is dependent on your observation powers, your creativity and your commitment. Here are some of the things to do:

• Design meal plans that you keto kid will like - why should he have to eat things he doesn't like?

• Keep accurate records of the operation of the diet and the progress of the keto kid.

• Monitor the operation of the diet accurately, and adjust (fine tune) the diet to operate in the optimum way for your keto kid.

• Watch out for side effects and deficiencies.

• Above all, fight for your child. No one has his interests at heart in the way you do. Question your neurologist, argue with you dietician. Present the facts and make your case. Also, remember that your medical team is overstretched; they will not remember the details that you know by heart. Be patient, help them to help you. And never take no for an answer.

The keto kid

The keto kid may be the last on the list, but he is at least as important as the others. To be successful, the keto kid must want the diet to work. That means enlisting his enthusiasm, and involving him as much as possible. It means designing a diet that he likes - what are his favourite foods? how can they be brought into the diet? - you know what he likes, and it is up to you to ensure that the diet is interesting and palatable for him. It means listening to what he says - if he doesn't want the food, there will be a reason - usually a good reason. If he is sick or unwell, there will be a reason - perhaps the balance of the diet is not right, perhaps there is a supplement that is needed. Sometimes, listening is difficult - babies and children with difficulties cannot tell you directly what they want, but they can still express what they want in a hundred subtle ways - it is up to you to understand their need.

All this may make the ketogenic diet sound difficult - it isn't, but it does need your care and attention. The rewards will be worth the effort.

return to   The ketogenic diet

(checked: )
(update 3.2: 18 July 2002)
(issue 3: 25 August 1997)