My name is Kari and I have a daughter named Kristin. She was born with a mystery brain disorder, and has no specific diagnosis. She started having seizures at 4 months old. Her seizures are very hard to control, and while we can manage them at home, they greatly affect her overall level of functioning. We haven been through over 16 different seizure meds. Sometimes they work briefly but never for long.
When Kristin was a year old, we were at a point where the ketogenic diet was less risky than the meds, so we decided to give it a try. I was nervous but very optimistic about the possibility of seizure control without all the side effects of the meds. Lets just say Kristin didn’t do too well with the change. It changes your body from burning sugar to burning fat for energy. Its like Atkins times 1000. (If you’ve ever done the low-carb thing, maybe you can relate.) She ended up with an NG-tube, but otherwise ate by mouth at that time. The diet stopped her seizures, but the side effects couldn’t be managed well enough, and we only stayed on it a few weeks.
When she was 6, we decided to give it another try. We chose to do it at a different hospital with more of an established program in place.
I will try to give you a basic overview of what’s involved. Different centers do it differently, so it may not be the same everywhere. There was a preliminary workup to be sure it was safe to proceed. We had to purchase a few basics- gram scales, some supplements, and a calculator.
To start the diet, you are admitted to the hospital for 4-5 days. It’s a huge change for your body, and doctors like to closely monitor the kids at this time to help them adjust to the changes. If you are strictly tube feeding, its actually easier than if your child eats. There are a few options: ketocal formula, RCF and microlipids, or a blended diet. In our case, Kristin has a GJ-tube and a history of GI issues, so we did RCF and microlipids mixed with water and possibly a touch of apple juice depending on the ratio, and it was given through her J-tube. They slow down feeds as they adjust because there is so much fat.
The diet can worsen constipation and reflux issues. We had to go back on Prevacid but it was manageable. There are usually supplements added because of the limitations of the diet.
In our case, I just had to make formula once a day. Her feeds ran over 15 hours. With the J you need slow feeds, but you can bolus if you use a G-tube. One of the biggest inconveniences for me was needing to take the scales for overnight trips, and also keeping the formula cold then being able to warm it up when needed. I ended up getting a bottle warmer and that worked well. It may be easier if you use ketocal in that respect.
The only added routine care for us was blood glucose monitoring as needed and daily urine dipsticks.
There are some great Facebook groups for keto. Our hospital had its own started by parents, and many centers do this. There is the Charlie Foundation website and a Facebook group called Keto Parents Rock that are very useful. Some hospitals follow the Charlie Foundation guidelines and some do not. This book, Ketogenic Diets, was a good reference when we were just getting started.
If your child eats some and is tube fed some, it is also doable. Wherever you choose to do the diet, they should be able to work with you to find what works for your situation. The keto team at our hospital was wonderful and extremely helpful.