The mother of a seven-year-old boy diagnosed with untreatable epilepsy wants to see more money put into using the keto diet to treat the condition.
Jake Hallam has been diagnosed with untreatable epilepsy. Photo: Supplied
Jake Hallam was one of the first to be put on the diet in Christchurch as part of a district health board-funded programme when he was three.
The keto diet, involving high fat and low carbohydrate meals, has been growing in popularity around the world as a way to lose weight, but according to Johns Hopkins University it was also one of the oldest treatments for epilepsy.
Its use as a prescription diet has had success in Christchurch. Jen Parker said her boy Jake Hallam started to develop epilepsy from age two.
He was soon having up to 60 seizures a day and spending long periods in hospital as different combinations of drugs were administered to try to bring them under control.
"One time he was hospitalised in the high dependency unit, and they tried intravenous medication. But I remember that being a really low point for us because he was basically knocked out for six or seven hours and then he awoke and immediately he was having seizures again."
Eventually Jake became paralysed on his right side and had difficulty walking.
"It just meant that there was really no normal life for us. We were constantly caring for Jake and trying everything to control the seizures but nothing was working."
Enter Canterbury District Health Board (CDHB) dietician Charlene Tan-Smith, who in 2016 was just getting started on using the keto diet to treat epilepsy in children, when all options on the drug front had been exhausted.
Jen Parker said the keto diet results were amazing and Jake (second left) went from having up to 60 seizures a day to fewer than 10. Photo: Supplied
Parker said the results were astounding.
"Within a few weeks his seizures had dropped by half and some days we got down to single figures, which was incredible having, you know, been up with 50 or 60 seizures a day."
Over three-and-a-half years Jake put up with his new diet, including scrambled eggs and peas for breakfast every day, and no ice cream.
"It was huge amounts of relief to have found something that was having an effect on the seizures. So that although he was still having them, the numbers had dropped so much that we knew that it was having less impact on his body."
Almost two years ago and after surgery and rehab to mend his paralysis, he was able to come off his medication.
A year ago he was able to come off the diet as well and was now living seizure free.
Tan-Smith stressed the version of keto she used was very different to the one popular amongst those wanting to lose weight. She said it must be accurate to within point one of a gram.
"That's why the ketogenic treatment takes a lot of dietician time is because there's a lot of mathematics that goes into it.
"With children, we need to make sure they still grow. We need to make sure that they don't lose weight, which is a big side effect of keto. But what we're doing is therapeutic ketogenic therapy. We're doing the 90 percent fat, not the 60 to 70 percent weight loss diet."
Tan-Smith was driven to make the diet available to as many children as possible. Part of her motivation was failing to secure funding for the therapy for four-year-old Brydie Lauder, who died in 2012 after suffering an epileptic fit.
"It is a bit of a bittersweet feeling for me because my journey with all these families and all these mummies, it all started from Brydie. My gorgeous, gorgeous little poppet. I have children of my own, you know, and every time I think of her, you know, my heart just gets really upset that we were not able to offer that therapy for her."
While the keto diet pre-dated the use of drugs to treat epilepsy and had been used for the past century, its adoption was limited because of the cost involved in having a dietician monitor it.
So far 45 patients have accessed the diet through Canterbury DHB, plus a small number through Auckland's Starship Hospital.
Jen Parker said the results spoke for themselves and she wanted to see the therapy made available to more families, so others did not have to go through what they had.
