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

Friday - - Front Page - San­dra House, 42, lives in Smith­ton, Aus­tralia.

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.

A very high-fat diet has worked won­ders to con­trol Jessica’s seizures

Luck­ily Jessica loves ex­er­cise, so she burns off plenty of the calo­ries she takes in on her high-fat diet

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