Treating Harry’s epilepsy with a ketogenic diet

When Harry was a baby he was diagnosed with epilepsy and was having 100 seizures a day. 

Harry’s mum Louise explains how treatment at Great Ormond Street Hospital (GOSH) and a ketogenic diet has helped Harry’s condition.

Coming to GOSH

“Just before his first birthday, I noticed Harry was doing these little head nods,” explains Louise.“Doctors thought it could be a tick but I was sure it was more than that.

“Around a month later, we were on holiday in Spain and I noticed he was doing the head nods every few hours. I took him to the doctor and they said it might be epilepsy and recommended we fly home immediately on an emergency flight. When we got home, I took him straight to A&E and they confirmed it was epilepsy. 

“It got worse and worse and by Christmas, Harry was having 100 seizures a day. It was awful to watch and I had to get him a helmet so he wouldn’t hit his head.

“In January, we were referred to GOSH to see a specialist. We arrived onto Koala Ward and the nurses were so lovely and kind. Harry was wired up for a 48 hour-EEG and the leads only stretch so far, so his movements were restricted to an area around his bed. I found it a scary prospect but with all the support we got, it was fine.”

GOSH patient Harry and his sister, Lily, baking

Starting a clinical trial

“Harry was put on two types of medication but was still having up to 50 seizures a day. An epilepsy specialist at GOSH thought the ketogenic diet might help Harry and told us about a clinical trial. They told us that the diet helps control epilepsy but there had never been any trial to demonstrate how effective it can be for under two-year-olds. I knew that they didn’t know exactly what the effects might be but I had confidence in what they were doing.

“The diet is a really high fat, low carbohydrate diet. It works by raising the number of ketones in the blood. The clinical research facility at GOSH is fantastic – the nurses are really lovely and we see the same nurse and doctor every time. There was so much work going on behind the scenes, with biochemists constantly analysing his blood, to monitor how he was reacting to the diet.

“The first 24 hours Harry was sick and had the shakes – it was a big shock to his body to go to fats, rather than carbs. It made him poorly but it was a positive thing and they just needed to adjust the ratios of the diet for him.

“Harry was on the trial for six months and it has been really successful for him. Now, on a good day, he’ll have less than five seizures and often they’re little more than an eye flicker.

The dietitian team at GOSH were amazing. Our dietitian, Niamh, comes up with our meal plans, how many calories Harry’s allowed a day and calculates what portion of fat to carbohydrate he’s allowed a day.

“If Harry’s sick, I just phone Niamh and she talks me through everything. She’s my first point of contact and if there’s anything she can’t answer, she puts me in touch with a nurse.

“Cream is a big part of Harry’s diet. Harry can drink double cream like it’s water, which is a big help to get fats into him. His favourite food is whipped double cream with sugar-free chocolate sauce on top. Good snacks are cookies with macadamia nuts and butter and egg, or banana cake with coconut flour. 

“It’s amazing how far he’s come and it’s all thanks to the diet.”

Family life on Harry's diet

“Harry's sister Lily, who’s now five years old, knows Harry does head drops and needs medication and his special diet. He’s been through so much and she is very caring towards him. She worries when he has to go to hospital but I tell her the doctors are helping to stop his head drops. 

“Lily has adapted well to Harry eating ‘special food’ as we call it. She just can’t walk around with a packet of sweets because he’s not allowed them.

“Harry knows he has special food. He has adapted amazingly well and doesn’t seem to pine for any foods. I think it’s probably easier when he’s so young than it would be for an older child. It can be tricky because I have to make sure I time everything around when Harry needs to eat and what he eats. We don’t eat out much because it’s so difficult. Christmas was easier than you’d think. I made Harry a small bit of meat and mashed swede, and Niamh helped me adapt a special Yorkshire pudding recipe to Harry’s portions.

“Harry’s not old enough to really understand why he’s on the diet, that’s something I will explain as he gets older. He has a blood test every morning to monitor his ketones and he is so good, he just takes his sock off for the skin prick. It’s normal to him. I send him to nursery with a packed lunch and he sits there happily with the other kids, just with his special food."

GOSH patient Harry baking for Bake it Better

Today

“On a good day, Harry will have less than five seizures and sometimes it will now just be an eye flicker, whereas before he might drop to the floor.

“The plan is for him to stay on the diet for two years and we’ll see if he can wean off. It’s a therapy to train the brain not to spark. Some kids have to stay on it and some can come completely off. That will be a scary time but you have to trust that it will work.

“When Harry was first diagnosed, I was told to watch his development as there was uncertainty about how his epilepsy would affect him. I was waiting for him to speak and that came flowing out of nowhere on his second birthday. It can happen at any age for children but for us there was that extra worry that the delay could be because of his epilepsy. I was so happy to hear him say ‘mummy’.

“Harry is a very bright little boy. He loves going for walks and kicking a football. He’s very cheeky and going through his terrible twos but for us that’s a really good sign.

“We still don’t really know what type of epilepsy Harry has. They have done genetic tests to see if there’s a gene deficiency to try and label it. As long as the diet is controlling it, that’s the main thing. I just want him to be able to live a normal life.”

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