A support blog for parents of children on the medical ketogenic diet for intractable epilepsy. KetoCal® is a medical food for the dietary management of intractable epilepsy and is intended for use under medical supervision. Talk to your healthcare provider to determine if KetoCal is right for you.
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My name is Hailey, a twenty-four-year-old college student happily living on the coast with my adventurous boyfriend of five years and our goofy husky German shepherd. I am a student yoga teacher and am pursuing my bachelor’s degree in Science Education. While at first glance I may look like a typical, healthy, 20-something college student, people are usually shocked to hear what I’m going through medically. You see, I have uncontrolled seizures, also known as intractable epilepsy, along with a neuro-cardiac condition called Dysautonomia. My seizures started mid-summer when I was thirteen years old. From there, my health rapidly declined. At my worst, I was having over forty seizures daily. I had to wear a helmet and was wheelchair bound. We tried several different anti-seizure medications, but unfortunately, nothing stopped my seizures.
Worsening Seizures:
When I was eighteen, in a dental office, I had a seizure and
my breathing did not return. Thanks to the quick action of the dental office
and first responders, I survived and recovered after just three days on a
ventilator in the Intensive Care Unit (ICU). During my time there, my doctors
recommended that I start eating healthier and exercising. As a kid my
diet was terrible, eating lots of junk food. However, I was a healthy weight,
so my parents never worried. With low expectations, but desperate, I
“cold-turkey” changed my diet, eating mostly whole foods and cutting
drastically back on processed foods. I started feeling much better. I joined
the swim team, and fell in love with yoga, rock climbing and jiu jitsu (sorry
mom).
The Medical Ketogenic
Diet:
Although exercising and eating healthier made me feel better, I was still having one to two seizures per month. This meant that I still couldn’t drive. Therefore, I became motivated to reduce my seizures further. I began researching and stumbled upon the Charlie Foundation and the medical ketogenic diet. I was eager to give the medical ketogenic diet a try. However, my doctors initially tried to steer me away from it, warning that it was extremely difficult and limiting. I explained to them that my seizures were very difficult and limiting too! Ultimately, we mutually agreed to try it, with the help of a medical ketogenic dietitian who I found on the Charlie Foundation’s Website. The first week or two, the diet was very difficult. I experienced flu-like symptoms and suddenly had insomnia. I would lie in bed crying because all I wanted was a box of bread rolls. I never thought I’d cry over food.
As time went on, the ketogenic diet got a lot easier and I learned what I could and couldn’t eat, and how much. My dietitian helped me obtain a prescription for KetoCal 4:1 LQ formula to reduce the stress of meal planning since I was attending work, school, and swim team. For the first time since my seizures began, I went two months seizure free. While the diet wasn’t completely effective, it did make a big difference on the frequency of my seizures! I was on the ketogenic diet for just over a year and a half when doctors purposely had me cheat to induce seizures for testing. After that, I lost motivation to continue the diet and fell off track for a few years. However, my seizures became more frequent, so I decided it was time to return to the ketogenic diet. I have been back on the medical ketogenic diet since July of 2019 and this time, with a better mindset and motivation.
My Life Today:
Since being on the medical ketogenic diet the second time,
my new seizure-free record to beat is about three and a half months, or 110
days. I have had a few accidental carb ingestions that have lowered my ketones
enough to cause breakthrough seizures. While unfortunate, these instances motivate
me to continue the diet and are great examples of how powerful the diet is, at
least for me! My mind feels clearer and less fuzzy on the medical ketogenic
diet. I also find that it is easier to maintain a healthy weight because
getting into bad eating habits is not an option when you’re on the medical ketogenic
diet.
We live in a society where we want a quick fix. However, if you’re reading this, I’m willing to bet that your quick fixes are not working. I’m learning that the medical ketogenic diet really isn’t too difficult. In a pinch, I can walk into a gas station and purchase nuts, salami and cheese. I can find an avocado just about anywhere if I need a snack. If I’m feeling lazy, I can just eat some spinach mixed with tuna and mayo. At most restaurants I can order plant protein with fats and veggies. If I’m really in a hurry, I just grab a KetoCal 4:1 LQ from the fridge. KetoCal also takes the stress off traveling. If I’m in the mood for pancakes, bagels, or sweets, I can make recipes that are ketogenic, using KetoCal 4:1 powdered formula, coconut flour, or almond flour.
Advice for Other
Adults Considering the Medical Ketogenic Diet for Epilepsy Management:
My advice to other adults who are considering the medical
ketogenic diet for seizures? Don’t let anyone tell you doing the ketogenic diet
for epilepsy is too hard. Also, don’t get too down on yourself if you
accidentally get kicked out of ketosis. We try our best but accidental
ingestions happen.
– Hailey
I was paid by Nutricia
for my time to write this blog post, however, my opinions are my own.
KetoCal is a medical
food for the dietary management of intractable epilepsy and is intended for use
under medical supervision.
Please note that this is one individual’s report of her experience with
the medical ketogenic diet and may not be the experience of others. Individual
results will vary. Please
discuss with your healthcare provider if the medical ketogenic diet is right
for you.
To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.
Reagan eating her medical ketogenic meal at a restaurant
First Seizure
It is a day I won’t soon forget. March 2013, Reagan and I took a girls’ road trip to Connecticut for my cousin’s baby shower. Reagan seemed off, and I attributed it to traveling and not being in her own space. She was restless and found it hard to sleep in a different crib. I scooped her up and had her lay with me. I awoke to her making odd sounds, drooling and grey, her body seemed limp, and she was unresponsive. An ambulance arrived soon after, and we were taken to a local hospital to hear the words no parent wants to hear: “Your child had a seizure”. Here I was in a city several hours from home, with my 16-month-old child, without my husband, terrified of what had just happened. Thankfully all of my family was in town for the baby shower, and my mom, aunt, and sisters sat with me while I ran through Reagan’s already extensive medical history with the pediatric neurologist. Was she born full term? No, she was considered a late preterm baby. Was she meeting her milestones? No, she had fine and gross motor delays, as well as speech delays. Is she followed by a neurologist? Yes, and recently had an MRI, which didn’t show anything abnormal.
Epilepsy Diagnosis
Yet, here we were. Reagan had experienced her first of many seizures. Reagan was transported by ambulance from the hospital in Connecticut to our hometown children’s hospital. We were later discharged with emergency medication and instructions for what to do if another seizure were to happen. The nights and weeks following I slept on Reagan’s floor next to her crib, terrified of another seizure. Four months later, another seizure followed, as well as another ambulance ride and hospital stay. Two months later, after a move to Pennsylvania, yet another. Then came the diagnoses: epilepsy, as well as cerebral palsy. It was a shock to the system. What did this mean for my nearly two-year-old? How would we manage this? Would she have a full life?
Antiepileptic Medications
Reagan started a medication, and any parent knows giving a medication to your young child can be like pulling teeth. But we soon learned the tricks of the trade, making sure she was getting the doses when needed. The first few months came with sleepless nights, feeling on edge and always wondering when the next seizure would come. And they came, almost like clockwork every four months. That “honeymoon period” of a seizure every four months lasted about a year and a half. Then the seizures started to pop up more frequently, when Reagan was sick, when she was tired, and when she was overheated. A second medication was added onto the first, and we achieved eight months of seizure freedom. With our neurologist, we started to wean Reagan from the initial medication. Unfortunately, that put us into a downward spiral of seizures and medication side effects. A new medication was introduced, and seizures came every two weeks. A new medication came shortly after, and it slowly helped to space the seizures out. After months of the medication being just okay, the neurologist suggested adding in another medication. With that came side effects that included extreme fatigue and loss of cognition. My little girl was hiding in plain sight, in a heavily medicated fog. For several months we worked through finding the right dose and finally it came. The combination of those two medications has bought us three solid months of seizure freedom, but the side effects were still there. And while some would consider that success, we didn’t. For us, success was being both seizure-free AND side effect free.
Enter the Medical Ketogenic diet
At the end of 2018, at a routine neurologist appointment, my husband and I expressed our concerns about the side effects these medications were having on Reagan. She gave us three options: the medical ketogenic diet, VNS, or brain surgery. We weren’t ready for surgery just yet and given that I had some knowledge of themedical ketogenic diet and its success rate with children living with epilepsy, we knew that would be our next step. The months leading up to Reagan’s inpatient stay to begin the medical ketogenic diet, we prepared Reagan for her new lifestyle. We explained to her this special diet could help make her feel better. We also went over the list of her approved foods and involved her in the appointments with the dietitian. By the time we entered the hospital, she was ready, even though both my husband and I were anxious. During the five-day-stay, Reagan acclimated well to her new diet and enjoyed visiting the hospital’s Kids’ Club House, watching movies and making friends with the nurses. She even got to visit the kitchen with the dietitian to make KetoCal®pancakes and a smoothie.
Reagan preparing a KetoCal pancake recipe
Reagan Today
Today, Reagan has been on the medical ketogenic diet for almost five months. She loves the food, knows her schedule and knows that she must complete each meal. She’s always been a little foodie and often asks me to contact the dietitian for new and exciting snacks and meals. The first month was hard on our family. The constant weighing and measuring were time-consuming and a little emotional. But now we are in a groove, even eating out at restaurants and managing holidays. Reagan maintains good seizure control, and we’ve seen so many additional positive changes. A little bit of that medicated fog has lifted already, she has increased attention to tasks, and those skills she seemed to have lost are coming back. The best part? We just received the go-ahead from Reagan’s neurologist to wean her from one of the medications! Since this was our main motivation for trying the medical ketogenic diet, we are thrilled!
Thinking back to that Mom who was scared and wondered what
this would mean for her then two-year-old, I would tell her that epilepsy is a
part of Reagan, but it does not define her. I would tell her that you will
manage this head-on and become a better, stronger person and an advocate not
only for Reagan but for all kids living with epilepsy. Does Reagan have a full life? Absolutely! Does her life look different than the
neurotypical child? Yes, but Reagan has faced each and every one of these
challenges from MRIs, to frequent doctor and therapist appointments, to
medication changes to the medical ketogenic diet, head-on with a smile on her
face. And when asked about her life, her response is “it’s fun!”
Erin Monast lives in the Philadelphia suburbs with her husband Travis, their daughter Reagan and dog Tag. She writes the blog, This Is Epilepsy and is inspired every day by the strength and perseverance of Reagan.
I was paid by Nutricia
for my time to write this blog post, however, my opinions are my own.
KetoCal is a medical
food for the dietary management of intractable epilepsy and is intended for use
under medical supervision.
To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.
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