It must be time for an update. Aside from the obvious cloud hanging over us as we wait for the next stage, things are by no means bad. Right now, I’m writing from a very comfy armchair, by a very cosy fire, with my wonderful husband in a very comfortable cottage in Daylesford. Bliss! We’ve eaten our way through the weekend and spent 36 luxurious hours alone. The peace is soaking right into my bones. Finally I have the energy to put some words down. Until now I just haven’t had the emotional or physical energy for it. I think I only write when I’m feeling happy. I wonder what would happen if I wrote from a less optimistic place. Perhaps I’ll try that sometime!
Scott’s been well. He has mostly recovered from the physical effects of chemotherapy and radiation. He’s back out riding again, waking me up early in the morning as he slips out of bed and into the latest lycra. Surgery is booked in for 2 weeks from now. He’s been back at work for a while, and I’ve been working a lot too. The extra work is not so much a choice as a financial necessity, but it’s been good to get out of the house and the mental challenge is good for me. I even joined a local collaborative co-working space so I’ll have somewhere productive to work while Scott’s at home from September. I like the community vibe and I can already see doors opening and opportunities presenting.
The last few months have been overwhelming. Back in May we were offered a place in The Royal Children’s Hospital Ketogenic Diet programme to manage Beck’s epilepsy. He has absence seizures, which means he blanks out for 10 – 20 seconds at a time, dozens of times a day. It effects his learning, his social life, and his ability to be the active boy that he’s always been. He can’t ride a bike, swim or even walk unsupervised near a road. The RCH offer one place a month to a child with medication resistant seizures, and there’s a lot of families wanting in. With Scott’s treatment in mind, the hospital offered to squeeze us in between his Chemo and Surgery. Not the best timing in the world, but it was possibly our best chance to give Beck a go at a normal childhood since the seizures started a few years ago. We decided we could manage it.
The Ketogenic Diet is no ordinary eating plan. It’s a very high fat, low carb, low protein diet. Some people go on a ketogenic diet by choice, as it can be successful for high performance athletes. But the version you have to follow for seizure management is much more intense. It’s based on a ratio and most kids start on the 4:1 ratio, which means that for each part of carb and protein combined, you need to have 4 parts of fat. A 4:1 ketogenic bacon & eggs is made from half an egg mixed with ⅓ cup of cream and a sliver of grated cheese, fried in about a tablespoon of oil. You could have about 2 fingers worth of bacon (10cms long) and any remaining oil in the pan has to be poured over the egg to soak in before eating. The food is either oily or creamy. To be allowed a few carrot sticks you’d need to swallow a tablespoon of cream.
The diet is tightly controlled. Beck had to spend a week in hospital to kick it off. Switching a human body from a carb burning machine to a fat burning machine can have side effects like nausea and lethargy. He had a pretty rough time, not to mention getting used to the food. Once your body starts burning fat, it produces ketones, and it’s these ketones that somehow have an impact on seizure patterns in the brain. No-one knows why it works, but it does, with a high success rate. There are obviously side effects from barely eating any carbs or protein, so he has to have supplements to meet the nutritional needs of a growing boy. We have to test his urine daily and blood a few times a week to make sure he stays healthy.
Before Beck could be released from hospital we were told to prepare a few weeks worth of his food in advance. You can’t make this food on the go. Everything has to be measured out and weighed to the gram. All meals have to be calculated in a spreadsheet set up for his specific ratio, and the calories are carefully controlled. Any variation could stop his body from producing ketones and impact on the success of the diet. For months we worked to create enough breakfast, lunch, dinner and snack recipes and tested them on Beck to see if he would eat them. There were plenty of failures. It’s near impossible to get that much oil absorbed into most recipes. We’ve assembled a crack team of food scientists (AKA the amazing Nannas) and have been churning out a factory line of little labelled bags of precisely weighed out foods for freezing. Our labs have had the most luck with muffins made from macadamia flour, frittatas, omelettes and a few casserole dishes. Strawberry mousse, a super creamy ice cream and a surprisingly good pizza base made from cream and macadamia flour have kept our patient smiling. Luckily, Beck responded so well to the diet that we’ve been able to reduce his ratio from 4:1 to 2.5:1. On the plus side this opens up a lot more variety in meal choices. On the other hand, we now have to create a new set of recipes. That’s my job this week.
It’s now three weeks since Beck started the diet. We’re cautiously optimistic. We’ve already seen a reduction in seizures. Some days we see only 1 or 2, compared to the dozens he used to have every day. Beck has been an absolute trooper. He’s kept to the diet without fail, even when it left him sobbing his heart out. I’ve seen him turn utter despair into calm resignation time and time again. Apart from having to eat different meals to everyone else, he’s basically given up bread, cereal, grains, pasta, rice, cous cous, potatoes, sugar, honey, anything sweet and even most fruits. I don’t know many adults who could do that and maintain a positive attitude. The physical detox from carbs alone would be enough to tip most over the edge. We’re so proud of him. Beck will stay on the diet for 3 months. If he achieves a 100% reduction in seizures, he’ll have the choice to stay on it indefinitely. We haven’t talked about it yet. If it works, he’s getting a new bike. I’m crossing all my fingers and toes for him.
We have a few weeks to get organised with Beck’s new meals, then Scott goes into hospital to have his rectum removed. When he comes out he’ll have a temporary stoma (a colostomy bag) for a few months. During that time, and possibly for a while afterwards, he’ll need to eat low fibre foods like white bread, pasta and potatoes – all the stuff Beck can’t have! You gotta laugh, don’t you??