A case of medicine-resistant epilepsy
Naois is 7 years old and for the past 4 years he has been with an epileptic condition that seems most akin to the Doose syndrome.
Despite having tried a variety of anti-epileptic medication (keppra, depakine, nitrazepam, fycompa, rivotril, ethosuxymide, felbamate, lamotrigine, rufinamide, topiramate and various combinations thereof) Naois kept having many epileptic seizures: during the day many absence seizures (blanking out / staring) and ‘drop attacks’ (atonic seizures) and at night tonic clonic seizures (‘grand mal’). His medication, in turn, also triggered various negative side effets. Some medicines turned him aggressive, others, sad. His walk became very unsteady and wobbly, and the medication generally turned him unfocused or downright absent.
Reducing seizures through his medical ketogenic diet
Naois’s epilepsy seemed impervious to most conventional anti-epileptic medicines. In a continuous attempt to make progress, in September 2017, Naois started a medical ketogenic diet. A ketogenic diet is a fat-based diet that seems to have important effects on various neurological conditions (epilepsy, Alzheimer, certain forms of cancer etc.).
As the figure below shows, every meal in Naois’s ketogenic diet consists of 75% fat (lipids) and 25% carbohydrates + proteins, following a 3:1 ratio.
He receives 5 servings per day that comply with a strictly controlled number of calories. For every meal we prepare for him, we consistently control and weigh how many grams of each nutrient (lipids, proteins, and carbs) he’s entitled to. For instance, a lunch requires 400 calories, 8 grams of proteins, 39 grams of lipids and 5 grams of carbs.
Since Naois has been following his ketogenic diet, his daytime seizures have stopped nearly entirely. At the onset of this process, in late 2017, Naois would still be using anti-epileptic medicines in addition to the diet. As we progressively stopped all anti-epileptic medication, Naois didn’t experience more seizures. His nighttime seizures, however, remained.
Next to the diet, we also give Naois other food supplements that are potentially supporting his brain -or gut- functions (curcumine, black cumin oil, krill oil, green tea extract, macrobiotic supplements and CBD oil).
Combining a medical ketogenic diet with food supplements has reduced the number of seizures and helped Naois enjoy a better life.
Seizure-free since 19 February 2021
Despite the ketogenic diet, Naois’s nightly (tonic-clonic) seizures didn’t stop, and we looked for a solution, as our end goal was of course to get our son completely seizure-free. Our neurologist suggested trying Depakine (one of the most commonplace anti-epileptic drugs) again. We did so in December 2020 and his nightly seizures reduced even more, until 19 February 2021 when Naois experienced his last seizure to date. It remains a mystery why Depakine didn’t work the first time around but did the second time. And we certainly hope that his 19 February 2021 seizure was his last seizure ever.
No slim diet but a medical ketogenic diet
Naois’s diet is a strict and medically precise ketogenic diet which is rather different from the ketogenic diet that some people are fashionably following these days to get slim.
The diet is effective against epileptic seizures as it puts Naois in an ongoing state of ketosis, which somehow calms Naois’s brain down. The state of ketosis releases ketones – some particles that are emitted when the body burns fat as a source of energy. A regular person’s body uses carbohydrates as the primary source of energy and doesn’t release ketones.
When Naois ingests too many carbohydrates, his body stops using fat as the primary source of energy, his ketone production stops, and his body is no longer capable of fighting off epilepsy. We regularly (weekly) measure Naois’s ketosis with test strips, so we can see if his ketosis keeps in the right range or gets out of control (too low, but also too high, which means he needs to get some extra carbs to boost his glucose levels).
Building up someone’s ketosis takes time, and one mistake in his food intake (e.g., too many carbs) can defeat this work and require us to build the ketosis up again, very slowly. More importantly, a low ketosis might bring about epileptic seizures again. Therefore, it’s essential that we keep track of his ketosis and keep following his diet strictly and consistently.
Why this note?
We certainly realize that it is not fun to follow so strict a diet for Naois, or for anyone else for that matter. But in Naois’s case, it is vital. It can be the difference between life and death. He himself doesn’t find his diet fun and yummy at all times, but in the meantime, he is used to receiving his own food and recognizes that he can’t be having what everyone else gets to eat. But it doesn’t help to take and voice pity on him. We are precisely trying to give his whole situation a positive slant, to keep the tone light and to not emphasize the differences too much. We try to impress it on him that he’s lucky to have his own special food, prepared with care especially for him.
With this note, we wanted to explain not just what his situation is, but also what others can do positively to support him (tips and tricks, things to do and to avoid) despite the constraints of his diet, so he can keep alive and happy.
We are grateful to you if you can:
- Encourage him to eat up his food by himself, and congratulate him when he does
- Encourage him to do things as independently as possible (dressing up, washing and cleaning, eating, tidying up, sports etc.)
- Should he go to the hospital for whatever reason, check that he doesn’t get any medication or food that contains carbohydrates (quite a few meds do)
- Explain clearly to everyone that gets in contact with him (friends, schoolmates, their parents etc.) that he doesn’t eat anything else than what we – his parents – have prepared for him
On the contrary, we find it important that you never:
- Give him some food we haven’t prepared or okayed (and certainly no sweet, sugar, chocolate etc.)
- Make him feel like or tell him that he should be sad about the lack of variation in his food, that it seems too fatty, that it’s not what others are getting… For the record, we have tasted everything we give him and like pretty much everything, and we do our best to introduce as diverse, fresh and healthy food as we can.
- Skip a meal of Naois without informing us.
- Omit to give him the full meal. He really has to eat everything up. All the more so when his meal is made of different / separate ingredients on his plate (e.g. avocado, tomatoes, cheese, macadamia nuts etc.). The proportion of carbs, proteins and lipids he gets is really important.
- Impress on him that he’s different to other kids (he has different activities and perspectives in life, but his personality is just as unique and different as any other person).
- Give him presents on a regular basis out of compassion or to compensate for what you find a pity in his life.