Keto diets have been shown to help people with uncontrolled epilepsy.
Some do the keto diet to lose weight, others in the hope of controlling epilepsy.
More traditional methods of drugs or surgery don’t stop everyone’s seizures, so a Waikato advocate is calling for a third option: the high-fat, low-carb keto regime.
About 500 people signed Epilepsy Waikato Charitable Trust’s petition, and the Health Select Committee has asked why the diet isn’t more widely available to Kiwis with the neurological condition.
“People can become anxious, depressed, even suicidal around the fact that there is no hope of their seizures actually getting better,” Epilepsy Waikato Charitable Trust advisor Maria Lowe said.
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“It seemed that we had to at least give people some form of hope that there was a positive treatment option.”
A handful of people in the Waikato felt they had nothing to lose and have already turned to the cream, avocado, and olive oil.
Down in Canterbury, a ketogenic diet service for children with epilepsy has prevented enough overnight hospital stays to save about $15,600 a year per patient.
The high-fat, low-carb diet has helped keep Canterbury kids with epilepsy out of hospital but dietary expertise isn’t available in Waikato.
“For some people with uncontrolled epilepsy, they can live in amber alert,” Lowe said. “They don’t know when [a seizure is] going to happen, where it’s going to happen.”
Repeated seizures are exhausting, Lowe said, and people may be unable to drive, have memory issues, or feel socially isolated.
A ketogenic diet can help about 60 per cent of people with medication-resistant epilepsy, the Health Select Committee’s report to Parliament said.
It’s routinely prescribed in countries including the UK, United States, Canada and Australia.
Starting the diet involves a big lifestyle change for many and Lowe petitioned for Waikato people to have specialist dieticians to support and monitor them.
It’s essential for children trying the diet, she said, so they get the right nutrients for development.
“There is a big need out there. People are asking for it,” she said.
Some of Lowe’s adult clients have tried the ketogenic diet themselves, alongside their medication, and found they had fewer seizures, or they were shorter or less severe.
“At the end of the day, it’s the cost of a dietician,” she said. “It’s got to be cheaper than having somebody hospitalised all the time, for 10 days perhaps, having their seizures sorted out yet again. And the drug bill is enormous too, let alone the personal cost.”
People with uncontrolled epilepsy can live on alert, always wondering when or where they might have a seizure, Epilepsy Waikato Charitable Trust’s Maria Lowe says.
Canterbury DHB has seen the benefits over three years running a children’s service.
It saved about $15,608 a year, per patient, because they needed far fewer overnight hospital stays due to seizures, the DHB’s submission said.
“We are catching and treating patients earlier. This has shown to not only help reduce [overnight stays in hospital], but it also impacts hugely on the development of the child.”
The service is extending through the South Island, and the DHB says the labour costs will total about $109,000 a year for a specialist dietician, dietetic health assistant and ketogenic pharmacist.
About 500 people signed Lowe’s petition to make expertise on the ketogenic diet more widely available to Kiwis with epilepsy.
After hearing evidence on the diet’s effects, the Health Select Committee asked why it wasn’t used more.
It heard about work being done on a hub-and-spoke model to allow more people access, and the Ministry of Health submitted that it shouldn’t be too expensive to make it more widely available.
The Ministry of Health is working on new guidelines which would broaden the age range clinicians would consider for the diet, and encourage them to suggest it earlier in the treatment process.
Waikato DHB said it was looking over the select committee’s recommendations and was committed to working on a “nationally sustainable solution” with the Ministry of Health.