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- Keto for Epilepsy - May 24, 2023
How we used food as therapy for our daughter
What first got me interested in Nutrition was that I really wanted to help people heal themselves and I never knew how much my knowledge would really come in to need for my family. My daughter was diagnosed with a sudden onset, rare and aggressive epilepsy at age 3 and a half and that began our journey into using Keto for epilepsy. Prior to that she was reaching all of her milestones, and we embraced the classic phrase “all anyone ever wants is for their child to be healthy”, but what happens if they were and then, in an instant, they regress and become really ill?
My daughter had excessive seizures which came in lots of different forms. We tried multiple medications and then she was diagnosed with a refractory epilepsy, which means that 3 or more medications are unable to stop seizures. The seizures were so damaging to her little brain that she became non-verbal and drooling, back in nappies at 5 years of age.
Taking the Leap – Trying the Ketogenic Diet with Kids
So what do you do with all of this knowledge that you have soaked up over the years in your profession? You know something needs to change for your daughter, that you need to pull out all of your inner Mama warrior and fight for your child. BUT IT’S NOT QUITE WORKING!
While we were in the world of endless hospital and Neurologist visits we started hearing more and more about the Ketogenic diet as a last resort, and 2 years in to my daughter’s diagnosis we felt as if we were at the last resort. When we initially undertook the diet, High fat low Carb which is basically a Ketogenic diet, was still a relatively new topic on the health agenda in Australia and was cutting edge at the time.
I felt like, as a Nutritionist, if anyone could undertake this diet and nail it, it would be me and my family. Confidence much?!
What does the ketogenic diet mean?
When you undertake a Classical ketogenic diet for a condition such as Epilepsy, the diet is treated like a medication in the body as the ketones have an action on seizures via it’s ability to affect ketone bodies . The amount of fat, protein and carbohydrate needs to be precisely measured on scales and you can only calculate the exact amounts via a program that the dietician gives you.
Everything is closely monitored on a keto diet as there are well-known side effects, such as constipation, dehydration and even kidney stones in rare 5-8% of cases.
Within a week of this very strict diet, my daughter had stopped drooling, she could engage with us more and within a few weeks her seizures had reduced significantly. It was a huge win for her and for us. Interestingly, the better she became the more aware she was of the food she was eating and she started rejecting it. We decided to transition her from the more difficult classical keto to a more manageable Modified Atkins diet, which more closely mirrors the keto diets that I sometimes recommend for weight loss clients. This option allowed for more protein, fat was unlimited and the carbohydrate content was still kept to a minimum.
So where are we now? She is now nearly eleven and has been off the diet for some time now. She spent over 2 years on both of the diets all up, and to be honest, one of the most common reasons people cease the diet is because they have ‘food fatigue’. It takes a lot of effort measuring and weighing everything and as a busy mum I think the load is heavy enough, let alone with this extra responsibility but when you know it makes a difference to their life, the changes are doable.
how do we eat now?
Now we eat a more varied diet but still with an emphasis on non-processed foods – as Sarah Wilson likes to say, JERF – Just eat REAL food.
We do make an effort to incorporate good quality high fat in our diet everyday, such as avocado, butter, coconut milk in Curries, organic free range fat from red meat and eggs to name a few. We try to eat good quality carbohydrates from brown rice and low fructose fruits. We have aimed to include some ‘treats’ in her diet as we feel that if you are too restrictive with kids’ diets they may rebel when they are older (if not now!).
And what of my daughter’s condition now? She is doing so well. With the combination of diet, supplements and anti-epileptic drugs she is starting to read and write, although delayed she is starting to want to learn and grow, and anything that she goes on to achieve is a milestone and to be celebrated in our eyes.
FREE family friendly KETO MEAL PLAN
As a result of my extensive experience using Keto with my family I have created a free meal plan that I would love to share with you.
- the basics of Keto
- how you can adapt current family favourites to more keto friendly options
- Lists of carbohydrates and fats most suitable to low carbohydrate, high fat eating
- Sample breakfasts, lunches and dinners AND snacks
- Sample day in the life of Keto friendly eating
- PLUS! How to add in carbohydrates for kids as it’s my belief, that unless a child needs to restrict their carbohydrates (such as a Ketogenic diet for epilepsy), then they should be eating good quality carbohydrates.
To download your free meal plan head click here.