[Ketogenic] Keto diet

[Dutch mom]

What types of seizures (and how frequent) were you experiencing before starting the alternative treatment?

Absences (petit mals), complex-partials, tonic stiff cramps, atonic drops, tonic-clonics (grand mals), myoclonics, all mixed together in many series each day and night.

What anti-epileptic drugs (medications) had you tried prior to the alternative treatment?

Age 1,5-5:

anti-epileptic drugs: Valporate (Depakote), topiramate (Topamax), ethosuximide (Ethymal, Zarontin), levetricatam (Keppra), lamotrigne (Lamictal), phenobarbital (Luminal), felbamate (Taloxa/Felbatol),

Benzodiazepines: clobazepam (Rivotril), clobazam (Frisium), diazepam (Stesolid/Diastat)

How long did you try the alternative treatment? (Not applicable to Lobectomy or Gamma Knife)

Allmost 5 years: my son started in June 2004 (age allmost 5) and is still on the ketogenoc diet now (classical LCT diet ratio 4:1)


If the treatment requires active participation, how diligent were you in applying it?
My special needs son has to be fed by us so he can´t cheat. We´re 100% strict in calculatng the diet on the EKM/dietplanner by Matthews Friends and we do weigh out all ingredients on a 0,1 gr scale. As soon as he eats anything wrong or doesn´t eat his whole meal, ketosis is to low and he has breakthrough seizures. He only gets ´keto proof´ drinks and is very limited on snacks between meals.

What changes (improvements or otherwise) occured with your seizure control with the alternative treatment?

90% seizure reduction. Before diet 10 to 100 szs a day, since the diet mostly seizure free, only occasionally seizures, especially when ill.
The EEG before the diet showed 90 to 99% continuous epileptic activity in a slow wave pattern on the background, which is a typical pattern for Lennox Gastaut Syndrome/Lennox-Gastaut Syndrome. After diet initiation he has less than 30% epileptic activity on the EEG, which is considered an amazing improvement for Lennox-Gastaut Syndrome. We´ve weaned of all anti-epileptic drug and benzo in his first year on the diet.

What (if any) adverse effects/events did you experience with the alternative treatment?

We´ve had periods with -severe- constipation, treated with Forlax now, twice he has had higher cholesterol levels, once he has had calcium in his urine, but no kidney stones. Keto checks of growth, blood and urine are done every 6 months.

How much did it cost you to implement the alternative treatment?

Initiation of the diet is 100% covered by health insurance in Holland.
We do pay for the costs of the -expensive- blood strips to test ketone and glucose levels. Some supplements are covered by health insurance /carnitine, calcium/ others aren´t /multi vitamines, vit D, Q10 / Keto checks in the hospital and other medical expenses are coverd by insurance.
Classical keto cooking is real cheap compared to normal cooking, the ingredients -meat, vegetables, butter, cream, creme frache, cottage cheese, mayonaise, oils- aren´t expensive and we only use very small amounts of veggies and meat. Only the Ketocal formula -we use it to bake beautiful waffles- the Omega oil, winter strawberries and macadamia nuts are expensive.