How to manage illness while on the ketogenic diet

You may notice that ketone levels drop if your child becomes unwell. This is quite common, and caused by a combination of factors, such as the infection itself and decreased physical activity. Although we would aim to maintain ketosis during illness if possible, it is far more important for your child to get well again.

At times of illness, if you are concerned about you child, it is important to contact your local doctor or ketogenic diet specialists. However the following guidelines give some general advice on how to manage illness while you child is following a ketogenic diet.

Vomiting or diarrhoea

· Stop the diet, and use Dioralyte until vomiting has settled. It is extremely important to maintain an adequate fluid intake at this time, so drinks should be offered frequently as tolerated. Clear sugar-free liquids such as water, sugar-free fizzy drinks and sugar-free squash could be used instead if preferred in older children, however if the symptoms continue for over 24 hours, Dioralyte should be used, as this will replenish the body’s electrolyte levels. If your child is being fed by gastrostomy or nasogastric ketogenic feeds, these should be stopped, and Dioralyte or water used in place of the feeds, ensuring an adequate fluid intake.

· Watch carefully for signs of low blood sugar and /or excess ketosis during this time. If there is no improvement in 24 hours, your local doctor should be contacted.

· When your child has stopped vomiting, re-introduce the diet. This should be done slowly. If your child is not able to take solid foods, the ketogenic milkshake recipe can be offered in small sips throughout the day. This may need to be initially diluted with water or dioralyte if there are problems with tolerance due to continued diarrhoea. The amount of milkshake given can slowly be increased, and then replaced with meals once appetite has returned. It does not matter if the correct amount of milkshake for the day cannot initially be completed, however during this time of building the diet back to normal it is essential to maintain an adequate fluid intake with other sugar-free drinks.

· When reintroducing meals, start with half the usual amounts for the first day or two. If your child is unable to complete meals, mix the meal constituents together, so that the food eaten is in the correct ratio of fat to protein and carbohydrate. If your child is unable to tolerate the full-fat meals due to continued diarrhoea or vomiting, it may be necessary to reduce the fat in the diet for a couple of days. Use half the prescribed amount of cream, butter, oil and/or mayonnaise at each meal for a day, and slowly increase this back to normal over the next couple of days as tolerated. If you are using Liquigen (MCT diet only), the amount used may also need to be reduced by half, and then built back up to full strength over 2-3 days. If diarrhoea is a continuing problem, the Liquigen may need to be introduced at a quarter strength and built up to the full amount over 4-5 days - this can be discussed with the dietitian.

· When reintroducing gastrostomy or nasogastric ketogenic feeds, initially use half strength for 24-48 hours, then gradually build up to full strength as tolerated over a few days.

Fever

· Use sugar free paracetamol or suppositories at the correct dose for your child.

· Maintain an adequate fluid intake by offering sugar free fluids without restriction. If your child will eat normally, then the diet can be maintained. However, you may prefer to use the milkshake recipe - this can be sipped throughout the day.

· It is important to contact your local doctor, as you would normally, if you are worried about your child’s health.

· Any other medication, such as antibiotics, should be sugar-free if possible.

Constipation

· Discuss this with your dietitian as some dietary changes may be possible

· Lactulose can be used as a stool softener and so can Fybogel. These products have very limited absorption into the body, so are unlikely to interfere with the diet.

Seizures

· If your child is unwell with worsening of seizures, check the ketones in the urine and contact your local paediatric team

· Emergency treatment can be given as normal, eg. rectal diazepam

· If taken to hospital a glucose infusion should be avoided if possible (unless in exceptional circumstances - see below). Your child can have normal saline and other types of infusion. The nurses will monitor your child’s blood sugar.

Low blood sugar

Many children on the diet have lower blood sugars than they would on normal diets. This is not a problem unless symptoms develop. Symptoms of low blood sugar include sweating, becoming cold and clammy, jittery, confused or aggressive. This is rare, but if it does occur, should be treated immediately by giving a drink that contains carbohydrate, such as a sugar containing (non-diet) fizzy drink or fresh fruit juice. Start with 1 - 2 tablespoons. However, if these symptoms do develop, you should also contact your local doctor, as it will be important to monitor blood glucose levels and provide further treatment. If hospital admission is needed, a glucose infusion may be required.

Excess ketosis

Occasionally ketone levels can become too high. This may occur after a change in the diet, or during illness. The signs of this are rapid, panting breathing, increased heart rate, facial flushing, irritability, vomiting and unexpected lethargy.

If your child seems to be showing these symptoms, give 1 - 2 tablespoons of fresh fruit juice or a sugar-containing fizzy drink. If the symptoms have not improved after 15-20 minutes, this should be repeated, and your local doctor contacted immediately. It may be necessary to alter the diet ratio if ketone levels are persistently excessive.

If you are very worried about your child's health, phone your local doctor or call for an ambulance.