A Ketogenic Diet is specifically used in children who have seizures, for seizure control. It is a high-fat, low-carbohydrate diet that puts the body in ketosis, meaning it forces the body to burn fat for energy instead of carbohydrates. The diet can be administered either orally or by tube, or a combination of both.
While the classic Ketogenic Diet is still the most widely used, other versions, including the Modified Ketogenic Diet, Medium-Chain Triglyceride (MCT) Oil Supplement Diet, Modified Atkins Diet, and Low Glycemic Index Treatment (LGIT).
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.
At about 5 months old, Jenna was diagnosed with Infantile Spasms. This is a catastrophic form of epilepsy, and the seizures are very difficult to control. We tried one medication, which worked for a while, but she continued having seizures. We decided to start the Ketogenic Diet as our second line of treatment.
Jenna was admitted to the hospital to begin the diet. While working with the Ketogenic dietician, we began the process of slowly weaning her normal diet and increasing the Ketogenic diet. There is a lot of blood work for her and a lot of training with the dietitians for us. The Ketogenic Diet can be difficult to manage because the ratio of fat, protein and carbohydrate needs to be exact to maintain the proper level of ketones to control the seizures. Jenna responded well to the diet and achieved ketosis pretty quickly and at a rather low ratio of fat to combined protein and carbohydrate. Finding the correct ratio is an ongoing process, and blood work is checked frequently and adjustments to the ratio are made accordingly.
Although we have never regretted having Jenna’s G-tube placed, it was at this point we began to really appreciate the benefits of having it as it made managing the diet so much easier. We used a Ketogenic formula as the base and added polycose powder for carbohydrate and healthy oil for fat. Each item needs to be weighed to the gram and mixed with an exact amount of water. We also had recipes for oral snacks that were calculated to the same ratio. Oral snacks are more challenging because each part needs to be weighed separately and then all mixed together so each bite is the same ratio. For example, if we were serving turkey, sweet potato and butter, everything needed to be weighed separately and then mixed together so the ratio was correct whether she ate one bite or ten.
Because of the G-tube, we were able to consistently feed her exactly the correct amount of formula, and this kept her blood sugars stable and significantly reduced her seizures. During an extremely stressful time, this was a comfort. We knew she was getting all of her medication and nutrition. The diet did not control all of her seizures, and we eventually added a third medication.
To properly manage the Ketogenic Diet, you will need a scientific scale that can precisely measure gram weight, a really good blender (or several!), a qualified dietician and commitment to the program. Honestly, I’m not sure we would have been as successful with the diet if she did not have the G-tube.
Jenna was weaned from her two other seizure medications during the course of the diet and weaned from the Ketogenic Diet in January 2013.