Epilepsy Update: The Ketogenic Clinic 

After waiting for weeks we were finally able to have my son seen in the Ketogenic Clinic for his epilepsy. He suffers from complex partial seizures that began when he was two years old and we’ve never been able to find a cause. We’ve suspected it has something to do with his diet but still haven’t been able to pinpoint this as the issue, even though he has seizures after he eats. He’s currently taking two different medications which equal 12 pills total daily and he has about 4-6 seizures a day. If you’ve never heard of the Ketogenic diet, it’s a diet used to control different illnesses with food. When the body produces ketones in the liver, it uses those as energy instead of carbs. Many epileptic children have used the Ketogenic diet to control their seizures and lots are able to wean their medications on it. The Ketogenic diet is one high in fat, moderate protein and almost no carbs. A regular diet consists of almost 300g of carbs a day. To keep him in ketosis, we have to shoot for around 30g of carbs per day and 75% of his diet has to be fat. Sounds easy right?!

For weeks leading up to this appointment we’ve removed all carbs from my son’s diet. This means he can’t have any fruit, rice, potatoes, pasta, bread, or anything sweet. Even certain vegetables like onions and peppers have carbs.

On most days my son has seizures normally after he eats or when he’s sleeping. I’m always listening for any abnormal bumping or noises coming from his room. I’m always on alert to run to his aid at a moment’s notice. When he’s having a seizure his safety is of upmost importance. It’s easy to get head injuries during a seizure. Watching a seizure happen is a scary time for our entire family and it’s something we experience multiple times a day.

At his Keto Clinic appointment we met with a neurologist, nurse and nutritionist. We discussed some of the things we’re already doing for his diet and what we need to do going forward. I have to more aggressively monitor the amount of foods he’s eating and count how many grams of fat, protein and carbs he has at every meal. He needs a lot more healthy fats than anything else that he’s eating. He’s already been eating organic coconut oil straight from the jar, but we still have to bump it up a bit. 

We had to do a big round of blood work, order a new MRI, and now write down everything he eats in grams and every seizure he has. In addition to this I have to check the ketones in his urine twice a day with ketosis test strips. The blood work will be checking for any genetic disorders which could be the cause of his seizures. We’re also beginning the process of weaning him from one of his medications. Some of the side effects are memory loss, speech impairment and confusion with a host of others, but those are the three that are most affecting him now. It will take a few months to wean him fully from the medicine. 

This is all certainly a lot for our family to take in, but we’re willing to do whatever it takes to get him healthy. He is such a brilliant child and the sweetest of my three. I will keep you guys updated as we progress through this journey.

Ashley