We Reduced Her Seizures by 40% Using the Ketogenic Diet

For the first three months of Hudsyn coming home from the NICU and all of us getting used to the ordeal we had just gone through, she had been developing normally. Meaning, she was hitting all milestones for a 3-month old. Everyone was surprised by this due to the severity of her brain injury…and her doctors, even moreso. Every time we went to a follow up appointment, they always gave me this feeling that things would likely change for the worse. We, on the other hand, were hopeful and persisted that she was our Miracle Baby.

Unfortunately, they ended up being right. One, sunny morning, I was changing Hudsyn in her room, and noticed her eyelids began fluttering up and down, rapidly. Then, her arms went stiff and she turned her body to one side. It was not normal, and it scared me. I took a quick video to show Dan and her doctor.

Her Epilepsy Diagnosis

We immediately called her neurologist and he asked us to send the video. Hudsyn was brought in for a sleep study and an EEG. Shortly, thereafter, she was diagnosed with structural focal epilepsy. Later, this diagnosis evolved into what’s called Lennox Gastaut Syndrome, a very rare and hard to control form of epilepsy. You can imagine our ongoing fear and frustration as we watched our baby girl have 40-50 seizures a day when we thought everything was going to be fine. There’s no way to explain the level of desperation we were feeling.

Working closely with her neurology team, we tried everything: anti-seizure medications, craniosacral therapy and even driving to Boulder to see a master Jin Shin Jyutsu practitioner. The medications made her glassy-eyed and sometimes completely unresponsive to our cues. The alternative therapies helped at first, but never “fixed” the problem. It was a little like being stuck in a sea of mud and everywhere you turned, hoping to find a branch or a rock to help pull yourself out, all you saw was more mud.

It was a very dark and devastating time for all of us.

At one of her follow up appointments, her neurologist asked us if we’d heard of the Ketogenic Diet. I immediately thought of bacon, butter and all the women who use it for weight loss. He smiled, and said, “Yes, that’s what most people assume but this is a little bit different form of the widely publicized weight-loss diet.”

We were hopeful again. Finally, something to use that doesn’t have the side effects her medications were having. He went on to explain that there’s no guarantee she would benefit from the diet, and she’d have to be hospitalized to get started on it. Both Dan and I researched the diet, watched the movie starring Meryl Streep, “First, Do No Harm.” We learned it would take time to allow her body to adjust, but the basic premise was that once the body goes from burning glucose for energy to burning fat for energy, seizures typically decrease.

Sunday, October 9, 2011, we had a nice, 1^stbirthday party for Hudsyn with family and some close friends. It was a big anniversary for us, and we did our best to put smiles on our faces and celebrate what we’d accomplished that first year. But, we were all a little scared at the path that was ahead of us. Dan made cheesecake cupcakes and we bought a pink and blue cake to help her celebrate. She didn’t smash the cake, but she was able to eat a few bites. The very next morning we were admitted to Children’s Mercy Hospital to begin this new diet.

We were expecting to stay only 3-4 days. However, true to Hudsyn’s style, she had her own plan. It was more like a full week. In order for them to release us from the hospital, she needed to go into ketosis. 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. Hence, why they needed her inpatient in case something went wrong. We HIGHLY recommend you work with your medical team when introducing something like this into a child’s diet. Despite our belief in alternative therapies, this was definitely not something we wanted to do on our own.

More on the Keto Diet

Over the years, lots of people have asked us what the Ketogenic Diet is all about. There’s a New York Times article that sums it up pretty well.

The diet itself 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 Hudsyn). It’s not considered an alternative therapy any longer. It has been researched, used and proven through names like Johns Hopkins, Mayo Clinic and Harvard Medical. Alas, despite its effectiveness and research-based proof, insurance companies are still skeptical that it should be covered under traditional plans because it’s considered a “diet,” thus coded as nutritional instead of medically necessary. We successfully appealed this and our primary insurance did end up covering the very expensive formula.

To learn more about the Ketogenic Diet and how it’s helping childhood epilepsy, please visit the Charlie Foundation website. They do an excellent job educating and supporting families who are on the Keto Diet.

Starting the Ketogenic Diet

Hudsyn began the Keto journey by drinking a bottle consisting of a mix of breastmilk and a special formula called KetoCal (made of specific vitamins; lots of fat; and a little protein). I remember it smelling like eggnog, which made me happy. We also gave her three “snacks” per day which had specific measurements of just how many carbs/sugars she could get in a day. Back then, we used pureed Gerber baby food (peaches, pears, applesauce, green beans, sweet potatoes, peas, chicken or beef with gravy). We would then add a fat to each snack. Typically, for better ingestion and taste, we would melt some butter and mix it with the baby food. EVERYTHING was measured to the gram using a food scale. We were taught how to do this by very close coaching from her assigned Keto dietician. It was an exact science and at first we were pretty intimidated by the amount of work this was going to be as she became older.

In addition, there were also special requirements for the products we used. Normal things like baby shampoo, powder, lotion, lip balm…even baby wipes and diapers were sometimes so specific that only one or two brands could be used. As she got older, we had to coach her IEP team (teachers, therapists at school) that things like finger paint would have to be avoided. We found workarounds like putting vinyl gloves on her hands so she could still participate with her classmates. If she is exposed to products that aren’t fit for the Keto Diet, it doesn’t mean she’ll have a seizure right away, but the epilepsy could show up full force within 24 hours after something like this happens.

We learned just how important of a role these products play in her daily living the hard way. While inpatient that first week, we kept testing her ketones and they weren’t improving. We couldn’t figure out why she’d plateaued. After walking through every detail of her nutritional intake and products, we realized we were still using baby powder when changing her diaper. Baby powder has a lot of carbs due to the corn starch it’s made from. We had been applying it directly into her diaper once each night after her bath. Once we realized it, we stopped. Immediately, her ketones stabilized, and she successfully went into ketosis.

Results of the Ketogenic Diet: Seizures Reduced by 40%

In the beginning, Hudsyn took everything by mouth. But, slowly, as the taste of the Keto diet became harder to take, she began vomiting…a lot. In fact, she developed such an aversion to the taste of the formula as we ramped up to the 4:1 ratio, she began throwing up every meal we gave her. Dan and I both tried the seemingly bland liquid…and I almost vomited. The taste was terrible…no wonder she kept gagging. I remember one, particularly difficult day where Dan had been trying to feed her for three hours and after 3-10mls of food, she’d gag and vomit. He became so concerned by this that we had a discussion with her neurologist again. She was losing weight and nothing would stay down. He mentioned this is sometimes a side effect of the Keto Diet (after all, it is heavy fat and hard on the tummy). But, hers was extreme. He recommended we consider putting in a G-tube.

At the time, I was pregnant with Damek, which compounded the frustration of spending so much time feeding Hudsyn. Her pediatrician also supported the idea of the G-tube. He asked me how I was going to spend hours feeding Hudsyn, and at the same time, take care of a newborn. They were right. We needed to do this. So, June 2012, we had the surgery. Hudsyn recovered quickly and easily with no problems. All of a sudden, giving medications, water and her formula were a BREEZE. I remember Dan exclaiming one night, “Why didn’t we do this sooner?!” She was happier, we were happier and it all worked out.

The vomiting continued sporadically but it was never as bad as those first six months. We tracked her seizure activity daily (by written tallying and an app I had downloaded on our phones). We continued to administer her anti-seizure medications. The results were slow, but once we had this year-long global view of data, we knew we had made all the right decisions for her at that time. Seizures had reduced by 40%.

Long Term Side Effects: Eight Years On the Keto Diet

I wish this was where the story ended. I wish I could say Hudsyn could be on this amazing diet forever. But, like everything since Hudsyn was born, the path changes. This October will be Hudsyn’s 8^th anniversary of successfully being on the Ketogenic Diet. We weren’t ever sure if she’d be on the diet long-term, but we knew the longer time had passed, the more we had to be aware of the side effects this diet causes.

With six-month check ups and regular communication with her dieticians, Hudsyn has always had adjustments to the grams of (now blended) food we give her. As she grew, she needed more calories. As new labs were drawn, we’d add more calcium or vitamins to make up for any deficiencies they’d notice. During the last eight years, we moved from formula to a blended chicken & oil only diet. This also helped decrease the vomiting, and made her feel better. Real food is always better than canned food, in my opinion (hence why I breastfed both my kids).

We also had to monitor a few other things. First, and foremost, her bone density. The Keto Diet is terribly hard on bone density long-term. She had done well up until the fall of 2018, when we learned from her newest neurologist that she was extremely osteopenic. This meant at any given time (lifting her from a bath chair; bumping her into something while carrying or transferring her) could result in a broken bone. And, that would be very painful for Hudsyn so we wanted to avoid this situation if at all possible.

Fear and doubt crept back into our minds. If the Keto Diet has to be reduced or removed eventually, what in the world are we going to do to replace the 40% of seizures it was controlling? This question was especially concerning since nothing else had really worked.

Introducing VNS

The VNS was much like the G-tube decision. We fought this recommendation for awhile before finally agreeing it was in Hudsyn’s best interest to get it implanted. We had a lot of reasoning behind this, which is why I’ll do another blog post on the VNS details, information and ultimate experience. For now, we just want to communicate that it has worked so well that we are now in the process of weaning the Ketogenic Diet and ramping up her VNS device.

Hudsyn is down to 2-5 seizures per day – a much better outcome than using medication only. Our journey with seizure control continues to evolve, but we are hopeful this is a much longer term solution without the long-term side effects like calcium depletion, ongoing GI & tummy problems (aka vomiting), kidney issues or the slowed growth.

We’d love to hear from you if you’re facing a similar journey. What has worked for you or your child? In the meantime, please subscribe to our YouTube channel. Dan does an amazing job each week at bringing episodes that show our family’s daily life… like this one: