The Ketogenic Diet for Epilepsy

Early in my son's epilepsy diagnosis, I searched for ways to stop the myoclonic seizures that ravaged his body. He would have hundreds of small body twitches daily and I knew that while they were not the grand mal type seizures that were more recognizable, the potential for harm to his developing brain was significant.

Myoclonic seizure diagnosis at age 3

A brain EEG would confirm the diagnosis of myoclonic seizures when he was only 3 years old. An EEG is a test that detects abnormalities in your brain waves, or in the electrical activity of your brain. During the procedure, electrodes consisting of small metal discs with thin wires are pasted onto your scalp. The electrodes detect tiny electrical charges that result from the activity of your brain cells.   

His EEG showed abnormal brain activity that caused our son to display small and frequent body jerking movements. He would sometimes look like he was having a stroke and would lose muscle tone in his neck and head, and his eyes would turn inward like his body was being attacked from the inside out. 

This epilepsy diagnosis came shortly after receiving news that our son was also missing micro-segments of his fifth chromosome. A condition now called Bosch Boonstra-Schaaf Optic Atrophy Syndrome (BBSOAS), which he has in addition to myoclonic seizures.

Seizure triggers and trying different meds

As a parent to a child with epilepsy, I understand that there are certain triggers like stress, changes in routine, anxiety or even an illness coming on that can cause the onset of an epileptic seizure. In our case, since our son is non-verbal, we often guess at how he feels before, during, and after seizure activity. We attempt to maintain control of everything we can and constantly search for alternative treatment options that will offer our son a better quality of life.

Our son failed at least 3 medications prior to us learning about and trying the ketogenic diet for seizure control. The initial seizure meds were sedative and changed his personality. One of them made him break out in a full-body rash and we had to stop that medication immediately. 

The ketogenic diet for seizures

We knew the ketogenic diet would be difficult to maintain and more expensive than a traditional American diet but it was worth trying because, according to some studies, "Children given ketogenic diets may be up to three times more likely to achieve seizure freedom and up to six times more likely to experience a 50% or greater reduction in seizure frequency compared to children given their usual care. Although the rates of seizure freedom reported by most of the studies were modest, in one study over half of the children given a classical ketogenic diet became seizure-free."¹

While the diet is difficult to maintain because you must food prep and weigh each ingredient on a food scale, for us it has been life-changing to maintain his seizures. 

The keto diet helped reduce his seizures

Upon starting the diet, our son went from having hundreds of myoclonic seizures per day to what seemed like zero within 2 days on the diet. Our son has now been on the ketogenic diet for well over 10 years and has maintained a better quality of life with much less seizure activity. 

The diet seems to work better in younger children with epilepsy and as our son continues to age, we have had to introduce another seizure medication into his daily routine. He is now on 2 seizure medications and the ketogenic diet. 

We fear that as he ages, the diet will be less effective. But for now, it continues to work along with his medications and we remain in control of the seizures. For those interested in learning more about the ketogenic diet for seizure control, I recommend checking out The Charlie Foundation for more information, and always, talking to your doctor about possible treatment plans.