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How The Keto Diet Helped Nora Go Seizure-Free

Louise | November 28
How the Keto Diet Helped Nora Go Seizure Free
Thanks to Ted and Christy Brekken for allowing us to publish Nora’s story and use her photos to help raise awareness about how Keto can be used to treat epilepsy in children.

Nora was 2 and a half years old when she had her first epileptic seizure. She was rushed to the emergency room, but her CAT scan (basically a special X-Ray machine), spinal tap, and all other tests came back normal. Unfortunately, three weeks later she had another seizure at daycare.

That was the start of a long journey for Nora’s parents as well as Nora into finding a cure for her epileptic seizures.

Anti-seizure Medication Isn’t The Long-Term Solution

After a slew of additional tests, which all came back normal, Nora’s parents were told that she had a lower seizure threshold than most people, and that anti-seizure medication (Keppra) would give her the best chance of outgrowing her tendency to have seizures.

Nora In Hospital

For six months she was seizure-free on Keppra, so her parents began to wean her off of it. Just a few days after completely stopping Keppra, Nora had another tonic-clonic seizure. These types of seizures usually last 1 to 3 minutes, where the person will lose consciousness and their whole body will stiffen up, and take longer for a person to recover. She began to have seizures more frequently, until she was having 10 myoclonic seizures (myoclonic seizures are short involuntary bodily jerks that last only a second or two, compared to tonic-clonic seizures that last for minutes) every day for a couple of weeks.

The doctors switched from Keppra to Depokote, another anti-seizure medication, which helped initially. But the seizures returned.

Both her parents and doctors knew that they had to try something else to help Nora – prescriptions just wouldn’t cut it.

Luckily, Nora found Dr. Carter Wray, who would become her keto-diet doctor.

After metabolic tests showed Nora didn’t have any issues that would prevent her from trying the Keto diet, her parents agreed to give the Modified Atkins Diet (MAD) a try. The Modified Atkins diet is actually a version of the keto diet. Instead of consuming the standard keto macronutrient ratios, your intake is 60% fat, 30% protein and 10% carbs. So It’s basically a higher-protein and slightly higher-carb version of the standard keto diet

MAD and Keto Ended Nora’s Epileptic Seizures

During Nora’s first month on MAD, she experienced some seizure-free days as well as some days with seizures. However, her mood and energy definitely improved. And additionally, her tastes changed dramatically…instead of expecting and wanting sugary foods, she stopped asking for sweets!

Although Nora still had some seizures after 1 month on MAD, the seizures were under better control and mostly myoclonics as she went to sleep and after waking up.

It wasn’t an immediate shift and a lot of experimenting with the diet was required, but gradually Nora’s parents with Dr. Wray’s help were able to increase her morning ketone levels. They did this by adding coconut oil to her diet throughout the day and helping her load up on fat before bedtime to keep ketosis going throughout the night. Then Nora had her last seizure.

What Do Keto Kids Eat For Epilepsy Treatment?

Doctors moved Nora up to a 3.5:1 ratio (ratio of fat to carbs+protein), which increased fat a bit. Her parents also committed to keeping her ratio much more consistent throughout the day so that each meal and snack met the ratio and making sure that she was eating at regular intervals to keep her ketosis level steady.

Her parents tried to keep her excited about her food, trying new “cookies” and other treats. They bought a Keto Cookbook, which was great fun for her. Nora looked at the pictures and told her parents what she wanted, and they would make sure that she had it.

Two years later, Nora remained seizure free.

Now, if you’re not aware of this, the rule of thumb in pediatric neurology is to get 2-years seizure free, any way that works, drugs or diet. If you can do that, there is a 60% chance that the child can come off treatment and never have another seizure again.

Do You Have To Stay Keto Forever?

After Nora hit the 2-year seizure-free mark, her parents began to wean her off of the Keto Diet, and eventually she returned to a Modified Atkins Diet (with more carbs and less fat than the Keto Diet she was following for the previous two years).

Nora has now been over 5-years seizure-free and 3-years since formally weaning off the ketogenic diet. Her parents still encourage a MAD or low glycemic index (LGI) style diet for her and the only candy she eats is high quality dark chocolate. There’s no store-bought sugar-filled cookies, cupcakes, or ice cream but Nora does get to enjoy sugar-free or low-sugar nut-flour cookies, muffins, and cakes as well as her MAD About Granola with half and half for breakfast.

Nora Birthday

Without the Keto diet, Nora’s parents don’t know where Nora would be today. But with the diet, she is a strong and smart girl, who is full of life and love.