Many children cannot eat orally for various reasons so, where appropriate, it is possible to use enteral tube feeding to deliver the ketogenic diet. It can be used for a short time to supplement an inadequate oral intake or longer term as the main source of nutrition.

There are different feeding routes, nasogastric (NGT) when the tube is passed through the nose into the stomach (short term) or a gastrostomy (PEG) through the stomach wall (longer term) or through the jejunum (JEJ), part of the small intestine. JEJ feeding is usually used when the child has extreme gastro oesophageal reflux and there is a risk of aspiration of feed entering the lungs.

Feeds

There are a range of ready to use liquid commercial feeds that have been designed specifically for ketogenic diet therapy which your dietitian can request on prescription. These include, Ketocal (Nutricia), K.Flo (Vitaflo) and Ketovie (Cambrooke). The ratio of fat to carbohydrate and protein varies in the different feeds. The percentage of long chain fats and MCT fat also differs. The most appropriate feed is selected based on the child’s age, weight, and nutrient requirements and tolerance. In very special cases it may be necessary to use a modular feed designed by the dietitian. The dietitian will advise on total fluid requirements for the child.

If transitioning from standard enteral feeds to ketogenic feeds it should be done over a few days or weeks, gradually increasing the percentage of the ketogenic feed and decreasing the standard feed. Feeds can be given as bolus feeds during the day or continuously via a pump over a longer period.

Bolus Feeding

When a child is bolus fed, a measured volume of feed is drawn up into a syringe and given over a short period, typically 10 to 30 minutes. The feed is allowed to flow into the stomach by gravity or very slowly pushed using the plunger. A bolus feed is given at regular intervals throughout the day, commonly every 3 to 4hrs.

Continuous Feeding

Continuous feeds are given using a mechanical pump at a steady, controlled rate over 8 to 24hrs.

Feeds can be stored in a closed container for up to 24hrs in the fridge so the total days feeds can be prepared in advance. It is recommended that feeds should only be kept out of the fridge for a maximum of 4hrs.

Blended Ketogenic diet (BKD)

It is also possible to use a blended ketogenic diet via a PEG as some parents prefer to choose and prepare food themselves. BKD involves blending ketogenic meals to a thin consistency that can be given as a bolus. BKD can help with feed intolerances such as vomiting, abdominal pain or abnormal bowel habits. The appropriate vitamin and mineral supplement will be prescribed by the dietitian. Good hydration is essential on the ketogenic diet and the dietitian will advise on fluid requirements.

Illness

It might be necessary to stop enteral feeds during an acute illness. It is essential to keep the child hydrated with either water or 4 sachets of an oral rehydration solution prepared as manufacturers guidelines to be given in 24hrs.

Monitoring

Parents should continue to monitor ketones at home as advised by their dietitian. Children should be regularly weighed and measured so that feeds can be adjusted to ensure good growth. Ketogenic bloods should be measured every 6 months.

Transition from enteral feeds to oral feeds

A child might have responded so well to the ketogenic diet that there is improvement in seizures and cognition and development which allows oral food to be introduced. This is commonly given as tasters initially and there is no need to change the enteral feed regime. If the child is progressing orally then a measured amount of a ketogenic meal can substitute for a measured volume of feed. It is important to follow the advice of the speech and language therapist and dietitian when introducing oral feeding.

And of course, don’t forget that there will be lots of families in Daisy’s Keto Café who have experience of tube feeding so don’t hesitate to pop by on Facebook and ask for their advice and experience.