Let food be thy medicine
Carolyn Voisey
Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love noth...
Let food be thy medicine
It’s been a decade but we are back on the ketogenic diet. First time round the Dude was only 13 months old; side effects meant weaning the diet after 18 months.
After a particularly horrendous six months of meds changes and nothing in any way helping, it was time to look again at the diet; we’re almost 8 weeks in and it never fails to astonish me how a diet can have such a dramatic impact on seizures.
Although the dude still has the wretched things daily, in just under two months he has experienced an ~80% reduction in overall seizure activity.
We learnt years ago that dairy, gluten and soy trigger his seizures; dear reader, allow me to inform you that trying to manage a ketogenic diet for a child who is not only fed blended food via PEG but who cannot tolerate gluten, wheat, soy or dairy has been a challenge!
But it has absolutely been worth it.
Fortunately for us, the Dude is not a child who struggles to get his ketone levels up; within a week of starting the diet he was in ketosis. Within two weeks, we were seeing an improvement in his seizure frequency.
We would have loved it if the diet could have stopped his seizures fully but that was something we were never expecting given the extent of his disabilities and the structural abnormalities in his brain.
Just like any other treatment, it isn’t without is drawbacks
The extremely low carbohydrates permitted on the diet means that a large number of fruit have too high a carbohydrate content to be consumed. Vegetables such as broccoli and carrots quickly use up a meals carbohydrate allowance, so getting enough fibre into the diet can be challenging leading to constipation issues.
The high fat content can worsen reflux and vomiting – two issues we are currently battling alongside extreme tiredness (the Dude’s, not ours). As the diet isn’t nutritionally complete the chances of having vitamin/micronutrient deficiencies is high so regular blood tests are in order – much to the Dude’s disgust.
Hopefully a few tweaks to his diet plan will get our gorgeous boy back to his happy, alert self. Its early days yet, and it is certainly not all plain sailing but for the first time in a very long while we have hope.
