Junk food cured my daughter’s epilepsy
Her little girl was having 14 seizures a day until Sandra heard of a special high-fat diet that could stop epileptic fits
Bored, I glanced out of the window – a house, a tree, a woman taking her dog for a walk, the postman delivering letters – an everyday suburban landscape and the same view I’d been looking at for the past few hours. We were driving home from holiday, and now I just wanted to get home and unpack. I glanced behind me to the back of the car, to routinely check on our girls Jessica, three, and Samantha, five. My youngest daughter was slumped, as if asleep, but her lips were tinged blue, almost purple.
“Stop!” I screamed to my husband Michael, fear thudding through me. “Jessica’s gone blue.” We’d just passed a hospital. “Go back,” I yelled, trying to shake Jessica.
She didn’t move. I couldn’t even tell if she was breathing. Michael, 33, turned round immediately, speeding back to the hospital.
Before the car had even stopped properly, I was out of the door, trying to reach my youngest girl. “It’s OK, Jess,” I said, grabbing her and running towards the hospital.
“My daughter’s not breathing,” I yelled, sprinting as fast as I could. Instantly I was surrounded by staff, all asking me questions at once. An army of medics rushed her away.
I didn’t know what to do so I just stood there until Michael came running in, holding a sleepy Samantha. “How is she?” he asked. I shook my head, and then a nurse arrived to say we could see Jessica. “She’s breathing but we’re keeping her in for tests,” a doctor said.
Relieved, I touched her hand. She was asleep, her face was back to a normal colour and her lips were a healthy pink, as if nothing had happened. The next day she had lots of tests and I was tense, worrying about the results.
“It looks like she had a seizure, but we can’t find anything wrong,” said a doctor, discharging her. I frowned – she’d never had anything like that before, but she seemed fine. We left with Jessica asking for chocolate and us hoping that it was a one-off.
Back home in Smithton, Tasmania, she seemed well until one day, a couple of months later, she was playing on the floor when suddenly her arms and legs began to shake uncontrollably. Her eyes rolled back in her head ad and she went unconscious.
Panicking, I ran for the phone and called an n ambulance. After three minutes Jessica stopped ed shaking and went into a deep sleep.
Nevertheless, we rushed her to Smithton District Hospital, where she was fine – just sleepy. She was examined but the doctor wasn’t n’t worried. “Nothing seems to be wrong. Keep a close eye on her,” he advised. They didn’t think k she needed any tests or treatment, but I was terrified and watched her all the time.
Another attack
A month later Jessica had another seizure. This time she was referred to the NorthWest Regional Hospital at Burnie, Tasmania. After tests to monitor brain activity, a paediatrician broke the news: “Your daughter has epilepsy.”
I was shocked. I didn’t know anyone with epilepsy and it didn’t run in the family. “But she’ll be OK with medication?” I asked, trying to be optimistic. No one knew.
Jessica took medication but it didn’t stop the he seizures. They got worse – she would tremble so violently her teeth would chatter and I was scared she would bite her tongue – and more frequent. From every month, they became every ry week and soon she was having attacks every day. They’d last a few minutes at a time and were utterly terrifying. All I could do was put her in the recovery position, on her side, make e sure that she couldn’t choke, move things from m around her and wait.
“Mummy, Jessica’s having a seizure,” Samantha would yell, helping to make sure her sister was safe. Jessica couldn’t remember anything when she came round and we didn’t t talk about it as we didn’t want to frighten her or for her to think she wasn’t normal.
I owned a takeaway shop and one time Jessica had a seizure there. Seeing how scared the staff looked made me realise just how used d to Jessica’s epilepsy I’d become.
Sadly, Michael and I split up when Jessica was four. It wasn’t because of her epilepsy, but t
the strain of looking after her and wondering if she was going to have an attack didn’t help.
We put on a united front for the girls, telling them we still loved them, but we were going to live separately. They took it in their stride.
From bad to worse
One day Jessica was in the kitchen chatting away when suddenly she just keeled over and fell flat on her face. I screamed, running towards her.
When she came round she didn’t remember anything. I rushed her to hospital and her consultant explained she was now having drop attacks, where she would just collapse.
“She’ll just drop on the spot,” he said. “I’d advise she wears a helmet to avoid injury.”
Jessica began school wearing a pink helmet made especially for epileptics. She hated it.
“Why do I have to wear this, Mummy?” she complained. I explained it was to protect her when she fell over and she nodded.
Though she never remembered her attacks, she knew she often woke up with bumps and bruises. The seizures and drops exhausted her
completely. “It’s like doing a hard day’s physical work in 30 seconds,” her doctor explained.
She was often too tired to go to school. After a big seizure she’d sleep for three hours. Luckily, when she went to school the kids were nice. “Jessica’s got wobbly bones,” a little boy said after she had a seizure in class. She smiled. “That’s exactly what it’s like,” she agreed.
As she got older the seizures and drop attacks became more frequent, sometimes happening two or three times a day.
I met a new partner, Graham, and when Jessica was seven we had a little girl, Abbie, who she and Samantha loved. Mine and Graham’s relationship didn’t last unfortunately, and I found myself with three little girls to look after.
Meanwhile, Jessica’s seizures were getting worse. Once she fell so hard her dentist said she’d knocked her teeth out of alignment.
I bought her a cricket helmet with a face guard. “I don’t want you to knock all your teeth out, darling,” I told her.
She wore it without arguing but mostly because I suspected she was too tired to protest. She was eight and having up to 14 seizures a day now and barely attending school. She was still taking medication, so my only consolation was how bad her epilepsy would be without it.
An unusual approach
Jessica started having seizures where her jaw chomped rapidly and she was prescribed more medication, which made her drowsier. “She’s got virtually no life,” I said to her doctor. “There’s a hospital in Melbourne that’s doing trials of a special diet for epileptics,” he said. “We could try that?” I nodded, desperate to try anything, though I couldn’t see how food could help when medication hadn’t.
I flew to Melbourne, to the Royal Children’s Hospital to see a consultant and dietician to learn about the diet. Experiments over decades had shown a diet very high in fat, low in carbs and with moderate protein helped epileptics.
“Nobody really knows how it works, but it appears to alter brain chemicals,” the doctor said. It was called the Ketogenic diet and tailored for each individual.
Based on Jessica’s age, weight and medical history they reckoned she’d need three meals a day, each with 58 grams of fat. In between she’d have a snack with 29 grams of fat too.
“She can’t just eat what she wants,” the nutritionist warned. “She’s got to stick to the exact proportions and foods on the diet.”
Possible side effects were weight gain, high cholesterol and kidney stones, but she’d be regularly monitored. “If it works, over time we’ll scale back her medication,” the doctor said.
Armed with diet sheets and meal plans, I flew home determined to give it a go, but still sceptical. I explained the diet to Jessica but she was so drowsy from the medication so the details went over her head.
The day before she started the diet she had eight seizures – about usual. The next day breakfast was a pancake made of almond meal and macadamia nuts, fried in butter and coated in cream and sugar-free maple syrup.
“Nice,” she smiled. For lunch she had cheese salad with a third of a jar of the fattiest mayonnaise I could find. Dinner was a chicken stir-fry with lots of bran oil and sesame oil.
Her snacks were more salad or coconut biscuits. Sticking to the diet was hard work. Everything had to be carefully weighed and calculated and I made big batches of meals and froze them. I had to think ahead so that when we went out, Jessica had her snacks and meals with her.
Light at the end of the tunnel
Amazingly, Jessica’s seizures decreased within a few weeks. Within four months she was down to two a day.
“It must be the diet. I can’t believe it!” I said to her specialist. Six months later she was having one seizure a day. Then she had just one seizure in the whole month. Early the following year her medication was halved. It was like watching my daughter come out of a fog.
She was the lively child I remembered before she started being medicated. “I’ve got my little girl back,” I kept grinning, hugging her as she played or chatted to me.
But in September that year she got a bug. The fever sparked a constant round of seizures. She was hospitalised and spent weeks back on her full dose of meds. After about three weeks the seizures stopped and she was discharged.
Back home on the diet her seizures slowed down. The doctors scaled back her medication again. We went a year with no seizures.
“Mum, I want to do sports now,” Jessica pleaded. She’d never been able to play sports before. So she signed up for soccer and loved it. I welled up with happiness, watching her run around the field like the other kids.
Jessica’s now 14 and hasn’t had a seizure for almost three years. “Mum, do I have to eat this stuff all the time?” she sometimes sighs.
“You can eat it or I start picking you up off the floor again,” I say. Then she concedes, rolling her eyes, a typical teen.
Incredibly, she’s not suffered any of the side effects of the diet – including weight gain.
“I wish I had your metabolism,” I moan. I only have to look at her breakfast and the weight piles on!
Recently, I cooked up a batch of fatty chocolate muffins for her at my takeaway. “They smell delicious,” said a member of my staff.
“Look at this,” I said and squeezed one. A pool of bran oil seeped out. “You couldn’t eat that every day unless you had to.”
Jessica can’t miss a day on her diet. Sleepovers and holidays are like military operations.
But as hard as the incredibly strict planning and cooking regime is, it was much harder watching her have 14 seizures a day. She had no life or future.
Now, thanks to her high-fat diet, she’s just like any other teenage girl. Healthy and happy.