For some families, the Ketogenic Diet has been a big part of helping with their child’s seizures. For Miss H, a doctor had recommended to hopefully get rid of her seizures that were unresponsive to medication. We want to share a bit with you about the process.
Hudsyn, our daughter, (and otherwise known by her fans as "Miss H") was first admitted to Children’s Mercy Hospital. In order for them to release us from the hospital, she needed to go into ketosis. This is the main reason why she needed to be in the hospital while beginning this type of diet.
Too far into ketosis and she could become very sick, or experience ketoacidosis. Too little into ketosis and the seizures could remain. It became a delicate balancing act and one that required a detailed look at whatever we put in her mouth, and even the products we used on her skin.
More on the Keto Diet
The diet has been around for nearly 100 years and has been proven to be medically necessary and very effective for kids who have epileptic seizures, especially those whose seizures are non-responsive to medication (like Miss H).
It’s not an alternative therapy, it’s been researched, used and proven through Johns Hopkins, Mayo Clinic and Harvard Medical. But insurance companies are still skeptical that it should be covered under traditional plans because it’s considered a “diet,” thus nutritional.
To learn more about the Ketogenic Diet and how it’s helping childhood epilepsy, please visit the Charlie Foundation website – which has plenty of videos and information to answer all of your curiosities.
Miss H’s Keto Experience
Miss H now consumes a little over 25 oz. of a special formula called KetoCal, which is made of specific vitamins, lots of fat, a little protein and even less carbs. We mix it with highly measured water and breast milk. It comes out looking (and smelling) a bit like eggnog.
She then is allowed three snacks per day, which constitute her solids. We give these at her regular breakfast, lunch and dinner eating times. These can be anything from fruit, such as peaches, pears and applesauce, to veggies like green beans, sweet potatoes and peas, and even meats, chicken or beef with gravy.
Because she only has four teeth, it’s all Gerber baby food, so everything is pureed. We then add a fat to each meal. Typically for easy ingestion and taste, we just melt some butter and mix it with the baby food. As she gets older, we’ll use things like pure whipping cream or oil. We measure EVERYTHING to the gram using a food scale.
Miss H also has special requirements for the products we use on her skin. Normal things like baby shampoo, powder, lotion, lip balm, even baby wipes and diapers, are sometimes so specific that only one or two brands can be used while she’s on the diet.
While we were in the hospital, we were expecting to go home Saturday morning as she’d been in a pretty good ketosis balance Thursday and Friday. However, upon getting her labs Saturday morning, her ketones came up short. The neurologist on staff made the call to keep her longer since it didn’t seem she was stabilized yet. My mom had been with her Friday night and realized that her baby powder was made from corn starch, a strong carbohydrate. We had been applying it directly into her diaper once each night after her bath. We quit using it immediately and the next evening, she had larger ketones than she’d ever had before.
The need for specific products is because many of these products contain carbohydrates that can be absorbed through the skin and could throw her out of ketosis after one use. This doesn’t mean she’ll have a seizure right away, but the epilepsy could show up in full force within 24 hours. As she gets older and starts to interact with other children and parents, this becomes potentially more challenging.
Being in the hospital.
Once we got our room, we were visited by about 20 different medical professionals. It was maddening trying to keep everyone on the same page. We learned quickly that we were in charge of advocating for her best interests since many of the staff -- especially the residents and even some shift nurses -- failed to review her history or status before entering the room.
This lack of attention sometimes resulted in things not being done the way we would’ve liked. For example, on the Ketogenic Diet intake stay, they check blood sugar regularly. This can be done via a finger or toe prick. Miss H prefers her finger…in fact she doesn’t even cry when it’s done this way. But her toe is a different story. She screams bloody murder for 20-30 minutes during and after a toe prick. On day two, an innocent nurse who failed to communicate with anyone else or us before coming in one day learned that the hard way.
Afterward, we immediately demanded the nurses make a large sign to go on her bed that stated, “Please prick my fingers ONLY.” It worked and all was well after that.
It’s also frustrating having to answer the same questions over and over again in a short period of time with different people. Some of this is necessary to create checks and balances. Some is not, especially when we’d get the same person asking the same question the next day.
Miss H. has tolerated the diet really well. Some kids hate the formula and all the extra butter. Turns out she loves them. This is a really good thing because in the Keto diet, fat is a huge part of the plan.
The new diet is a slow, but steady road. Children are on it for at least three months to give it the best shot at working. The goal is to become seizure free, and eventually wean her off all medications. If it doesn’t improve or there are only moderate improvements, families can consider continuing down the anti-seizure medication path. But many prefer to avoid that if at all possible, knowing that quality of life on medication is lower and drugs can have nasty side effects that limit development even more.
Blog post is an excerpt from the "See the Seitz" Family Blog, and originally published October 16, 2011.