Taken from "The Epilepsy Diet Treatment" Book - "If phenobarbital has been prescribed, it is usually either markedly decreased or stopped altogether after the fasting period begins. It is often cut in half at the onset of fasting and eliminated entirely when feeding begins. This is because the acidosis of starvation allows more phenobarbital to enter the brain and thus children can become very sleepy. Depending on what other medications the child is on, we often stop or reduce one other medication in addition to phenobarbital at the onset of the fasting period." "...blood levels of medications tend to rise in children as they start the diet, even with no increase in dosage. Binding of medications to proteins may also change with the body's acidosis. Thus, levels should be watched carefully..."
In Australia, our doctors do not reduce medications as described above. It is therefore critical to observe any adverse changes in your child that may indicate this problem.
Production of ketones is essential for this diet. Too many ketones can be hazardous especailly if AED's were not reduced at the commencement of the diet. The ideal level of ketones is 4-8 in the morning and increasing to 8-16 in the evening. If ketones get to 8-16 in the morning and continue to get higher as the day goes on, you will need to break down the ketones with a sugar drink. You may need to consider reducing medications.
Excessive ketones can cause acidosis. Some symptoms of this are "unwell feeling" - no reason, lethargy, heavier than usual breathing, flushed cheeks, nausea, behavioural problems and sometimes vomitting. This can happen when you are beginning to reduce medications. It may be necessary to lower the ratio gradually until you have reduced the medications sufficiently and the symptoms subside. You will need to gradually increase the ratio as well. 30 - 60 ml of cordial to break down the ketones should aleviate the problem temporarily. Also ensure that your child is sufficiently hydrated. If toxicity is also present, it is necessary to act promptly. Both these conditions can cause an increase in seizure activity as well as an increase in severity. If left untreated these conditions are extremely dangerous.
If constipation becomes a problem for your child, try increasing the amount of water intake by 100 - 150 mls and/or reduce the amount of cream and/or offer a couple of lettuce leaves each day. If this doesn't work, ask your pharmacist to recommend a medication that is suitable for the diet. (carbohydrate free if possible otherwise calculate it into your meal plans) You may find an increase in seizure activity. If you do, you have to choose which is the worst evil - constipation or seizures. (The medication should only be short term, so try and get through the seizures as best you can.)
Taken from "The Epilepsy Diet Treatment" Book - "Possible causes to look for include:
The child is being given food that is not on the diet
The child is eating extra food in secret
The child has gained weight - excess calories!
(100 calories per day equals 1 pound per month which is sufficient to cause this problem)
Liquid is not being spaced out enough
Food is being prepared incorrectly
Information on food ingredients is incorrect
The diet has been miscalculated
The child is sick
The child has come out of ketosis for some other reason"
Taken from "The Epilepsy Diet Treatment" Book - "The most likely cause of sleepiness on the ketogenic diet is an elevated medication level. Medication levels frequently rise in the blood of children on the ketogenic diet even without a change in dosage..." "...the diet itself should not cause sleepiness or a persistent decrease in energy levels. Fatigue is not a side effect of the diet. Indeed, many children on the ketogenic diet become more alert and energetic than they were prior to the diet..." "...hypoglycemia or low blood sugar levels can also cause drowsiness..." "...blood sugar levels should return to normal within a few days of starting the diet."
Taken from "The Epilepsy Diet Treatment" Book Third Edition - "The one month trial serves several purposes: If the diet does not show some benefit in the first month, it is unlikely to work in the long run. If it does show benefit, fine-tuning over the next three months - and even six months - can often lead to even better seizure control and less medication.
If the diet is working or shows potential to be effective within the first month, most families find that it is well worth the time and trouble to stick with it.
Unlike the "honeymoon" effect of anticonvulsants, when many drugs work for just two weeks, it is relatively uncommon for the diet to work well for a period of time and then cease to work.
Relapses are usually related to some change in circumstances, and control can usually be re-established once the cause of the relapse has been identified.
If the diet is not working after a month, or if it is not working sufficiently well after fine-tuning for three months, the family can always go back to trying to control seizures through medication."
Page last updated December 24, 2000
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