How the 'keto' diet helped Ivy

For children with epilepsy and other seizure conditions, the ketogenic (or ‘keto’) diet is more than a popular weight loss craze, it can be a lifeline for them and their families.

"The keto diet is a very high fat, low carbohydrate diet used under close medical supervision to treat children with seizures that have not been controlled with medication. The purpose of the keto diet is for the body to burn fat instead of carbohydrates for energy. This produces ketones, and for some children having a high level of ketones in the blood helps reduce seizure activity." Erica Tsang, Specialist Ketogenic Dietitian from the Children's Hospital at Westmead explains. 

“The ketogenic diet has helped many of our children with difficult to treat epilepsy lead happier and healthier lives. It’s very rewarding to work with these families and see tangible improvements in seizures.” she says. 

The Dietetics and Nutrition Department across SCHN has a number of dedicated, specialist dietitians who help manage the diets of children on ketogenic diets. Each patient’s diet is completely personalised, and the dietitians work to assist patients and families on their journey through education, support and planning.

“We have seen really good success with the keto diet in many patients. We’ve seen decreases in seizure severity, improved cognition, and even some patients becoming seizure free” says Jessica Menzies, Specialist Ketogenic Dietitian from Sydney Children's Hospital, Randwick.

For three year old Ivy and her family, the keto diet, and the support received from dietitians has made an unimaginable impact on their lives.

Below, Ivy’s mum, Marina, tells their story.

“We went from counting each minute we had with Ivy to being able to lose count of the days we’ve had with her”

“From very early on in my pregnancy, we were told to expect the worst. My babies were sick and everything was complicated. When they were born at 27 weeks, we were very aware that we may have limited time with our twin girls, Ava and Ivy. Ivy in particular was extremely unwell, suffering from brain damage due to poor blood flow and a lack of oxygen in-utero. She was born half the size of Ava, weighing only 660 grams. Even before she was officially diagnosed with anything, we were given a poor prognosis as Ivy was so unstable, already showing signs of seizure activity and she couldn't regulate her body temperature or breathe properly.

Ivy was so tiny and struggled to grow, so she was given extra fat in her food (MCT oil). When she had the fat included in her feeds, she seemed more stable and would grow better, but if the fat was taken away, she would struggle more and lose weight. There were times her seizure issues were so severe that her growth was being impacted because her brain and body were unable to rest and recover. Once the fat was added to her diet again, not only did Ivy grow, her seizures reduced and we recognised that something about the fat was helping her feel more settled and calm.

When Ivy was approximately six months old, we spoke to our neurology team at CHW about what we were seeing, and they confirmed that there was a correlation between the inclusion of fats in her diet and her health improving. They referred us to a specialist ketogenic dietitian and Ivy has been on the ‘keto’ diet ever since.

Ivy receives her food through a tube in her stomach, so for us, the keto diet involves a special formula that contains lots of fat to keep her body in ketosis as well as all other needed nutrients. Everything Ivy consumes is set up and monitored by our Dietetics team, and everything we do is in consultation with them. If we are thinking of adding or changing anything, we always speak to our dietitians, and they are consulted at each and every hospital stay to ensure that everything that is put in Ivy’s body, even down to IV fluids, won’t impact her ketones negatively.

Recently, we have included foods like avocado and salmon in Ivy’s diet. While she is unable to eat these foods traditionally, we are able to give her a taste before including it in her formula, which means we are able to have food experiences with Ivy, even though it's not conventional. We joke that Ava has quite a refined palate for a three year old, as we all eat lots of healthy fats as a family, including olives, fatty fish and nuts. While the girls eat differently, the foods they do share provide a really important way of bonding, and also assist in educating Ava on her sister’s condition.

I am a registered nurse and have an extensive healthcare background having worked in the industry for over a decade, but I wasn’t aware of the impact the keto diet could have on patient’s lives. It’s so well known for being popular for weight loss, and is often seen as a ‘fad’ diet, but in a medical setting, the difference it’s made for Ivy has been nothing short of phenomenal. It is however, more complex than you think. It’s a lot of monitoring and all about being consistent, so we always ensure we’re reaching out to the experts to guide us carefully. It’s definitely not something I would take on by myself, it’s very specialised.

Ivy has life limiting medical and disability related complexities, but she continues to amaze us every day. We were told that it was likely Ivy would never have purposeful movement, but she can now play with specially-modified ‘switch toys’, she reaches out her hand for kisses and is able to communicate by lifting her right hand for ‘yes’ and left hand for ‘no’.

The keto diet, and the support we’ve received from our dietitians, and the Hospital system as a whole, has been a game changer for our family. It’s meant that Ivy can be at home with us safely, and that is something we could have only ever dreamed of.”

Dietitians across SCHN play an enormous role in the care and treatment of patients with a huge range of complex conditions, helping them grow and thrive. This week is Dietitians Week, dedicated to recognising and thanking our dietitians for all they do in supporting sick kids.

Today is also Purple Day, a day to celebrate, and raise awareness for people living with epilepsy. An estimated 1 in 200 children in Australia have epilepsy, and many more have other seizure disorders. 30 percent of those diagnosed unable to manage seizures with medication, and that is when support from people like dietitians is simply invaluable. 

For more information on Purple Day, visit the Epilepsy Alliance Australia Website.