Understanding Nutrition
Food is made up of a variety of nutrients including protein, fat carbohydrate (sugars and starches), fibre, vitamins and minerals. The nutrients from food that supply us with energy include fat, protein and carbohydrate. Under normal circumstances the body uses carbohydrate as its major source of energy. Carbohydrate rich foods include bread, cereals, grains, fruits and starchy vegetables. The current message about a healthy diet is to have a high carbohydrate and low fat intake.
How do you measure ketones?
When ketones are produced in high enough levels in the blood, they can also be measured in the urine. Testing the urine each morning before breakfast and each evening between 4-5pm is an essential part of monitoring the diet. Urine testing is done with a Ketostix purchased from any Chemist shop and will be explained further during your child's hospital admission.
Commencing the Ketogenic Diet
The Dietician sees all parents and children before the final decision is made to commence the diet. This is usually done at an outpatient visit where all aspects of the diet and hospital stay will be explained.
What to expect in hospital
Admission
Once the decision to commence the diet has been made an admission to the Neurology ward will be booked. Most children are admitted on Monday morning with discharge from the hospital on Friday if all is going well.
Fasting
Complete fasting with low calorie fluid (water) only is commenced after the usual evening meal on Sunday. This fast generally continues for 48 hours until Tuesday teatime when a Ketogenic eggnog drink is commenced. Meals are graded up over the next 48 hours until the full energy requirement is achieved. This slow grade up is required as the resulting ketosis can sometimes make your child nauseous with little energy and a small appetite. This usually resolves after the first week on the diet. Fluid also is restricted over this time with the allowed amount of fluid divided into amounts of 120ml each 1-2 hours. This fluid restriction usually is necessary for the duration of the diet with individual adjustments made according to your child's needs.
Blood glucose monitoring
During the fasting period your child's medical condition will be closely observed. Blood sugar levels are checked every 6 hours by a finger prick test, but may be needed more often if the level becomes very low or your child becomes symptomatic of low blood sugar (hypoglycaemia). Guidelines for treatment of low blood sugar levels will be discussed with you on your admission. Symptoms of hypoglycaemia that need to be treated promptly include
- Paleness
- Sweaty forehead
- Excess sleep or difficulty to rouse
- Rapid pulse
- Dizziness
- Nausea
Urine testing
Urine testing for ketones will commence on admission and continue twice daily. Meals will commence when ketosis has been well established, usually after 48 hours of fasting.
Meal planning
The Dietician will be responsible for determining the amount of energy (measured as calories) that your child requires daily. Meal plans will be calculated for each child according to individual needs and usual foods eaten at home. As the aim of the diet is to avoid excessive weight gain or loss, meal plans may need to be recalculated or adjusted once discharged from the hospital during the fine tuning period if this becomes a problem. The method involved in calculating meal plans will be discussed in much greater detail during admission.
Diet and food introduction
At the end of the fasting period meals are commenced at one third of your child's usual requirements. Ketogenic eggnog drink is the only meal that does not need to be eaten all at once due to the correct balance of fat, protein and carbohydrate and is usually given for the first 48 hours of eating.
Discharge
Many children are ready to leave the ward after the first few eggnog drinks have been tolerated and blood sugar levels have started to return to the normal range. If this is decided, the child may leave the ward and stay with the rest of the family in the parent accommodation while sessions on calculating the diet and its management are completed with the Dietician. Under some circumstances return to the ward may be required for observation, blood glucose monitoring or medical care if your child becomes unwell.
Final discharge from the hospital is only on the permission of your Neurologist.
Vitamin and Mineral Supplementation
As the diet is restricted in most food groups it is not adequate to meet all of your child's requirements for vitamins and minerals. In order to prevent any nutritional deficiency carbohydrate free vitamin and mineral supplements are prescribed for all children commencing the Ketogenic diet.
Medications
No change to your child's anti-convulsant medication should be made without discussion with your Neurologist. All other medications will need to be carbohydrate/sugar free, so it will be important to make your GP and Pharmacist aware of the diet. Under some circumstances current medications may need to be changed, particularly if they are taken in syrup form.
All the information above is from the "information for parents" sheets handed out by the Dietician at the Royal Children's Hospital in Melbourne.
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