‘The diet we work on can decrease seizures in children with epilepsy’

Eimear Forbes is a senior paediatric dietitian at Temple Street Children’s Hospital

Eimear Forbes is a senior paediatric dietitian at Temple Street Children’s Hospital, Dublin. Photograph: Eric Luke

Eimear Forbes is a senior paediatric dietitian at Temple Street Children’s Hospital, Dublin. Photograph: Eric Luke

 

I joined Temple Street Children’s University Hospital as a dietitian in January 2002 and, in 2010, I took up a position as a specialist dietitian in the hospital’s neurology and ketogenic service.

This involves working with children with intractable epilepsy (a type of epilepsy that does not respond to anti-seizure medication), who follow a specialised diet with a view to decreasing seizure activity. This work is in partnership with the neurology team.

Half of my job is in this area and the other half involves seeing children who are admitted to the ward. I cover the neonatal ward at the moment.

Infants with very complex illnesses, who have come from the paediatric intensive care and high dependency units, are admitted to this unit, as well as babies who have been admitted to hospital due to common illnesses (such as chest infections), which are more challenging in newborns.

I start my working day at 9am. I check my emails and check for new admissions that may be under my care. I generally go to the ward first to review newborns who have undergone surgery and, as a result, may not be able to feed either orally or through a tube in their gut.

My job is to devise a suitable nutrition solution to be given intravenously which is called parenteral nutrition, or PN.

The delivery of PN to a newborn ensures that the baby continues to grow and receive all the nutrition s/he requires until the time comes when the baby can start on feeds orally. We make up these solutions based on the child’s blood results, weight, nutritional requirements and overall medical condition, in consultation with their medical team.

I need to order PN each morning to ensure the solutions are made and arrive to the ward that evening. I also review other babies who require tube feeding or fortification of breast milk or infant formula and, in some situations, specialised infant feeds.

The rest of my day is dedicated to my work with the neurology and ketogenic service.

The ketogenic diet is extremely high in fat and very low in carbohydrates – up to 90 per cent of energy comes from fat, where a normal diet contains about 30-35 per cent energy from fat. The diet is designed to stimulate the production of ketones, which are usually produced only in starvation. By placing the body into this ketotic state, seizure activity may be decreased.

It essentially involves turning the normal diet on its head by eliminating the main sources of carbohydrate – bread, potatoes, rice, pasta, milk, yoghurt – and increasing fat content by using butters, oils, creams and other specialist products, while providing adequate protein intake through meat, eggs, fish, chicken.

This diet is very different to the usual healthy eating guidelines for children, so it requires ongoing monitoring by a dietitian, in conjunction with a consultant paediatric neurologist and neurology nurse specialist.

There can be many adverse consequences if the child is not monitored correctly. These can include poor growth, malnutrition, raised cholesterol levels, decreased bone mineral density, renal stones, vitamin and mineral deficiencies, as well as hyperketosis (an excessive amount of ketones in the body) and hypoglycaemia (low blood sugar levels) which may make the child feel acutely unwell.

I have 16 patients, ranging in age from three years to 17, who are following the diet. Each afternoon I spend time calling their parents to discuss how they are coping with the diet at home.

On Tuesday and Thursday mornings, I attend neurology outpatient clinics to review patients with their paediatric neurologist and implement dietary changes based on their seizure activity.

Usually on Mondays and Wednesdays, the nurse specialist and I meet new patients with epilepsy who are being considered for the ketogenic diet.

Before being considered for the diet, they would have tried many medications to control their epilepsy, which were not effective.

Children find the diet difficult to follow as they can’t eat what they want. Sweets, chocolate and crisps are out and they can’t be like regular kids and have their treats. The families who undertake it are great and it’s amazing what they do.

When the diet works, it can be life-changing and it is very rewarding to play a part in transforming the life of a child with epilepsy and that of their family by decreasing their seizure activity and improving their quality of life.

This is what I truly love about my job.

When a patient starts on the diet, the neurology nurse specialist and I initiate a minimum of three days of intensive education with the parents on meal planning, blood-ketone and blood-sugar monitoring, and illness management.

In younger children or children who are fed via feeding tubes, we admit the child to hospital to ensure safety when starting the diet.

Children will often feel ill and lethargic initially as the body adapts to using ketones as an energy source, instead of glucose. When a new patient is starting on the diet, the majority of my week is spent with them to ensure safety and to provide ongoing education to the family.

In most situations, if the diet is working and effective, children follow it for two years. We then try to wean them off it very slowly in the hope that they can go back to a regular diet without the seizures returning or increasing. In rare cases, children follow the diet on a long-term basis.

Parents often inquire about access to a similar service at the hospital their child attends but, unfortunately, this service is available only here or at Our Lady’s Children’s Hospital, Crumlin. Eimear Forbes is a member of the Irish Nutrition and Dietetics Institute (MINDI), #trustadietitian

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