drug resistant seizures

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Tomas’ Epilepsy & Medical Ketogenic Diet Journey

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The Ketolicious Kid, Epilepsy Warrior (aka: Tomas, the baseball player)

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Tomas is 4 ½ years old. He loves everything baseball, outdoors and his family. He says he’s going to be a baseball player when he grows up and that we’re all going to see him on TV one day. He is my 3rd child, the sweetest of all my kids, the baby of the family and the one that was supposed to be on auto-pilot. Tomas was the best baby. He got dragged around everywhere that his older siblings had to go: school events, soccer practices, gymnastics competitions, etc. He was a typical baby and toddler, and everything was perfect, or so it seemed. I’m not sure when, but I started feeling that there was something off about him, something different than my other kids. I didn’t know how to describe it and people told me I was crazy. So, I tried to shake the feeling, and convinced myself everything was ok. Until …. April of 2018.

Epilepsy Diagnosis

We were at my parents’ house celebrating my sister’s engagement. Her fiancé was about to give a toast when, THUD, Tomas collapsed. He was having a seizure, a BIG one. It lasted about 3 ½ minutes but it felt like an eternity. What came after was worse than the seizure itself. He was lethargic and confused, talking but not making sense and then fell into a deep sleep. I watched him all night. The next day he woke up as if nothing had happened – talking, playing, asking for breakfast. I was so relieved, but it was short lived. As I set his breakfast down, he had another seizure. I rushed him to the hospital where he was admitted. There he underwent a series of tests (VEEGs, MRIs, blood work), and we were acquainted with all the -ologist and -icsts the hospital had to offer. We were told that he had epilepsy. The VEEG showed he was having 3 types of seizures (I didn’t even know there were 3 different types of seizures). It was happening all the time and we didn’t even notice. They threw out a few terms for possible diagnoses, said further testing was necessary, put him on anti-epileptic medications and sent us home with instructions to follow up in a week or two.

Intractable Epilepsy

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The next four months were a blur of increasing seizures, neurologist appointments, VEEGs, and changing and adjusting medications with little to no improvement in seizure control. All the testing came back negative and there was no explanation for his seizures other than “intractable” or “refractory” epilepsy (meaning not responding to medications). We were losing our little boy; he was in a fog of medications and seizures. This was when doctors suggested the medical ketogenic diet as a way to help manage his seizures. They told us that it would involve an initial hospitalization of 1 week and then a strict diet, in which I would have to measure food to the tenth of a gram (0.01 g) for the foreseeable future. I was skeptical. I felt there was NO way that I’d be able to feed my child in this way, especially working full-time and with the crazy hectic life we lived. But I was also desperate and willing to try anything.

The Medical Ketogenic Diet

We started the ketogenic diet in the hospital on August 20th. We had a rough start; Tomas did not tolerate the diet well at first. Thankfully we were working with an amazing team of neurologist and dietitians through the hospital’s Keto Clinic that knew just what to do. Instead of starting at our goal ketogenic ratio, we started the diet gradually. We began with the Modified Atkins Diet and worked our way up to the goal ketogenic ratio slowly, allowing Tomas’ body time to adapt. It took several months, from August to December, to work up to where he needed to be. Those months were difficult. Every few weeks we were changing ratios and adapting meals, tracking his weight and monitoring seizures. I wanted to quit on many occasions, but what kept me going was the small changes I started to notice in Tomas. Although he was still having seizures, the fog seemed to be lifting. I’d get glimpses of who Tomas used to be. This was the trend: small improvements and fewer daily seizures, until January 27th when my husband and I realized that we hadn’t recorded a seizure since December 22nd!!! Fast forward to February 14th – Tomas had his first “normal” 24-hour VEEG since his epilepsy diagnosis.

Tomas Today

Tomas is currently on a 4:1 ratio ketogenic diet and has been seizure-free for 3 months. I am so amazed with how the ketogenic diet has changed our lives. I meal prep weekly for the family and plan out Tomas’ daily meals in advance. I own multiple gram scales and more silicon molds and spatulas than I can count, but I wouldn’t have it any other way. I’ve learned to cook/make things I never thought I could, such as keto bagels, pizza, and even blueberry muffins (thanks to KetoCal®). We are lucky to have resources out there like KetoCal that make a restrictive diet feel not so restrictive and make it easier to be a mom to a Keto Kid. We juggle soccer, baseball and gymnastics, eat out, and travel. I didn’t think we would be able to do these things with such a restrictive diet, but I have found that it just takes a little prep work and creativity. Yes, there are still hard days with managing the diet, but the benefits outweigh the challenges. I never thought that our quality-of-life would improve the way that it has. I’ve met amazing people on similar journeys to ours and had opportunities to help others (like writing this blog post).

Advice for Others Struggling with Intractable Epilepsy

My advice for anyone out there suffering from seizures is to give the ketogenic diet a chance. Ask your medical team if its right for you and your family. Be patient and take it one gram at a time, one meal at a time, and one day at a time. Find support and don’t go at it alone because you are NOT alone. There is a huge keto family out there eager and willing to provide advice and support, you just must know where to look. And if you’re reading this now, you are already on the right path. Who knows in what ways the ketogenic diet might improve your life. Good Luck!
Below are some links to some helpful sites and groups:

– Lourdes

I was paid by Nutricia for my time to write this blog post, however, my opinions are my own.
KetoCal is a medical food 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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Ella’s Journey with Dravet Syndrome and the Ketogenic Diet

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Ella on the way to an appointment with her ketogenic dietitian

Ella is 9 years old. She has an orange belt in tae kwon do and is very excited to be going to a new school for 3rd grade. The best way I can describe my daughter is that I wish everyone had the same approach to life and towards others as she does. She is optimistic, kind, and compassionate to anyone she meets. One would not expect such a positive or loving disposition from a child who has been through so much in such a short time.

Dravet Syndrome

We assumed Ella was healthy when she was born a hefty 8lbs 15ozs. She was very curious and social as an infant. Ella was around 10 months old when we realized something was very wrong. She had her first seizure during a nap. It lasted over 2 hours and required her to be intubated for 2 days. We were told it was due to high fever, and were convinced it was the last one she would ever have until she started having them several times a week. She had been intubated 4 times before we knew what we were dealing with. Ella was diagnosed with a genetic condition called Dravet Syndrome at 3 years old. It is a rare and catastrophic form of epilepsy that brings with it a host of medical complications ranging from global delays to chronic infection. It never goes away and it does not always improve over time.

The Ketogenic Diet

Ella had been prescribed several anti-epileptics with little to no noticeable seizure control. She was often in a drug-induced fog or extremely irritable. Her neurologist recommended we put her on the ketogenic diet.

The decision to place Ella on such a restrictive diet was not one that was taken lightly. After researching it, we at first felt overwhelmed and reluctant to try it because of the potential adverse effects involved (the most common problems are digestive issues, although these can usually be managed under the care of a keto dietitian). We also knew that managing the ketogenic diet would be a time commitment, and we struggled with the idea that Ella would not be able to eat food other children could eat. I remember wondering how I was going to keep up with it. I worked full time and had Ella and her younger sister. There were a lot of factors delaying us (my husband and I) from making the choice. However, we decided that we had more to gain by trying it. We knew that if it did not work, we could take Ella off of it and try something else. Fortunately, we met several families who had their children with Dravet Syndrome on the ketogenic diet who were experiencing fewer seizures. They shared their stories with us and it put us at ease.

Following a brief admission to the hospital in order to safely wean Ella onto the ketogenic diet, her dietitian sent us home with several recipes. Ella’s keto dietitian encouraged us to try KetoCal® products to help us find some meal alternatives. KetoCal offered several tasty options for kids such as ready-made shakes (plain or vanilla) and powder mixes that could be used in sweet or savory meals.

After 4 days of being on the keto diet, Ella used the bathroom on her own for the first time. Her speech and cognition improved dramatically, and more importantly she went 6 months without a seizure. It was the longest she had gone without one since 10 months old.

My daughter has been on the ketogenic diet for 5 and half years. Part of why keto has worked for Ella is that we make her a part of the process by empowering her as much as possible. We create new recipes often, based on her requests. This gives her a sense of control over what she eats. Seeing Ella smile after she tastes something new is a huge pay off.

Advice for Other Parents

If you have a child with Dravet Syndrome or intractable epilepsy, please consider the ketogenic diet as a low side-effect option for managing seizures. The diet may not be right for everyone, but it works wonders for so many with uncontrolled seizures. Please do not hesitate to speak with your neurologist about having a consultation with a keto dietitian, or even reaching out to members of the epilepsy and ketogenic diet community. There are many groups on Facebook where you can connect with other families who have tried the ketogenic diet, such as:

You can also find a ketogenic diet provider near you here: https://myketocal.com/kdcenters.aspx.

-Dana

I was paid by Nutricia for my time to write this blog, however, my opinions are my own.

KetoCal is a medical food and is intended for use under medical supervision.

The ketogenic diet for epilepsy should be used under medical supervision.

Please note that this is one family’s report of their experience with the ketogenic diet and may not be the experience of others. Individual results will vary. Please discuss the potential benefits of the ketogenic diet with your healthcare provider.

To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.

Interested in sharing you or your child’s ketogenic diet story? Email us at MyKetoCal@nutricia.com.

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Leah’s Story: Epilepsy & the Ketogenic Diet

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My precious daughter, Leah, is 13 years old. She loves to listen to music and swim. She also enjoys riding her golf cart with her brothers, Noah and Elijah, and her little sister Eden. She enjoys listening to the birds while relaxing on her swing outside.

Concerning Symptoms

Leah was developing on track and meeting all milestones until she was around 5 ½ months old. On Labor Day of 2005, I noticed Leah’s eyes were rolling up and to the right. Since Leah is my third child, I knew that something was off and that it wasn’t normal. I actually worked in Leah’s pediatrician’s office and mentioned it to the pediatrician at work the following afternoon. My husband, Brandon, and I brought Leah into the clinic the following morning. The pediatrician discovered that Leah wasn’t visually tracking with her right eye and referred us right away to a pediatric ophthalmologist at a children’s hospital 2 hours away. The ophthalmologist thought Leah might have delayed visual maturation. He wanted to monitor her and keep an eye on it over time.

At Leah’s 6-month check-up, Leah’s pediatrician discovered that she wasn’t visually tracking with either of her eyes anymore. The next couple of months were pretty busy. After more appointments and exams, they discovered that Leah developed cortical visual impairment. As time went on, we also noticed that Leah wasn’t developing properly and was showing some regression. We saw a neurodevelopmental pediatrician. He could see something wasn’t right, but wasn’t sure what was going on. He did some testing, labs, and recommended a referral to a pediatric neurologist.

Then, in November, before we could meet with the pediatric neurologist, I was holding Leah when I noticed that she was throwing her head, arms, and legs outward in a rhythmic pattern. I started counting them. It was happening in clusters every 8 seconds. I thought she was having a seizure. The Internet wasn’t widely used in our rural area back in 2005, so I asked my Aunt Jamie to help look some things up for me. We found some information on Infantile Spasms, also known as West Syndrome, and thought it sounded a lot like the symptoms we were seeing with Leah.

Infantile Spasms

The following morning, I told Leah’s pediatrician that I thought Leah had Infantile Spasms. I told her about the episodes the previous night and she agreed that it sounded exactly like Infantile Spasms. She said it would need to be diagnosed with an electroencephalogram (EEG), but that it would explain Leah’s recent symptoms and developmental regression. The pediatrician called the neurologist that Leah was scheduled to see in a couple of weeks, who agreed that it sounded like Infantile Spasms. She said sometimes it takes a little while to show up on an EEG and to keep our appointment we had scheduled. By that time, if it was Infantile Spasms, it would more than likely show on the EEG.

Fast forward to appointment day. Leah was scheduled for an EEG and another test called a visual evoked potential (VEP) in the morning, and then to see the neurologist in the afternoon. After the first two tests, the EEG tech told us that she had to call the neurologist. I knew then that she saw something abnormal. She came back in and said that the neurologist wanted her to do one more test. After that was done, we had lunch, then went to the neurology clinic for Leah’s appointment. The neurologist told us that our suspicion was right and officially diagnosed Leah with Infantile Spasms.

Leah’s neurologist recommended a medication called ACTH for Leah and told us that it wasn’t a medication that they kept on hand at the hospital so it would need to be ordered in. She explained that Leah would need to be admitted to the hospital to start the medication and that we would be trained to give the injections at home. She told us to go home, make arrangements for our boys, pack a bag, and come back the following afternoon. We were scared, but mostly relieved that we finally had an answer. It took a little while, but the ACTH stopped the Infantile Spasms. Leah had some feeding difficulty, reflux, and was very developmentally delayed, but was doing pretty well otherwise. She had a lot of therapies through Early Intervention each week. She started preschool and was learning new skills.

Seizures Return

Five years later, shortly after Leah turned 5 years old, I had a flashback to November of 2005. I was holding her on my lap one evening and I felt rhythmic moving. Her right shoulder was moving back and her head kept turning to the right. Like years before, I started counting and got a sick feeling in the pit of my stomach. I knew she was having a seizure. The following day, I contacted her neurologist and she scheduled an EEG. The episodes started happening more often. When she had the EEG done, it confirmed that the episodes were indeed seizures. We tried one medication and it didn’t work. Over the next 2 years we tried a second and then a third. They weren’t working.

The Ketogenic Diet

When Leah’s seizures started, she began to develop problems with eating and drinking. We noticed that the periods of time when she wasn’t eating and drinking much at all, her seizures lessened. I mentioned that to Leah’s pediatrician and she said she wondered if the ketogenic diet would work for her. I didn’t know a lot about it. I had some friends I met in the Infantile Spasms Community Facebook group that had children that were on or tried keto. Some had success and others didn’t. At our next neurology appointment, I mentioned it to the neurologist and she agreed that the ketogenic diet was our next option.

After we decided to try the ketogenic diet, our neurologist had the nutritionist come meet with us to talk more about it. We discovered that Leah was malnourished and dehydrated because of not wanting to eat and drink. Our team decided that until we could get her healthy, we would not be able to start the ketogenic diet. They decided the best way to get her healthy was to have a feeding tube inserted. Leah had her feeding tube placed in August of 2011. She started gaining weight and looked so much better, but by that time she was having hundreds of seizures a day.

On November 1, 2011, Leah was admitted to Geisinger’s Janet Weis Children’s Hospital to start the ketogenic diet. We started out slowly by using her formula mixed with KetoCal® 4:1 powder. Then we kept adding more KetoCal® while decreasing the other formula until she was getting all KetoCal. We had some bumps along the road during the admission. Leah was having some low blood sugars and was vomiting. The neurologist and nutritionist worked together to find that KetoCal® 3:1 powder, which has a lower ketogenic ratio, was a better match for Leah. The lower ketogenic ratio kept both her blood sugars in range and her stomach tolerated it well. We were discharged and returned home where I monitored and charted seizures every day. I started noticing a decrease in seizures. They decreased more and more every day. On day 8, Leah didn’t have any seizures. It was the same on day 9 and 10 and 11. Eventually, we were able to successfully wean Leah off of the last seizure medication that she was on. Leah was doing very well. She was happy. She was healthy. She was interacting with family and friends. She was enjoying life. Leah remained seizure-free on the ketogenic diet for nearly 3 years.

Leah Today

Just a few days shy of Leah being on the ketogenic diet for 3 years, things changed. I got a call from Leah’s school nurse, who said that Leah was having some involuntary rhythmic movement. Unfortunately, 4 years later we’re still seeing it despite continuing the ketogenic diet and adding in many more medications.

Leah is now 13 years old. We have finally found a cause for her epilepsy. She has a spontaneous mutation of her ALG13 gene. It is a very rare mutation, but is now a known epilepsy gene. She is having many seizures a day. We recently had a discussion with her neurologist about what we do next. Part of our new plan is to gradually wean Leah off of the ketogenic diet. It kind of makes me feel bad, but I know we gave it our all. Keto has been a big part of our life for almost 7 years now and I will forever be thankful for those 3 wonderful years that the ketogenic diet and KetoCal allowed Leah to be Leah. To be happy, healthy, and learning new things.

Advice to Parents Considering the Ketogenic Diet

My advice to parents considering the ketogenic diet is to discuss it with your neurologist, and if recommended, try it. We were cautious when starting. We didn’t want to get our hopes up just to be let down. I said the day we started that we’ll hope for the best and pray it’s our miracle, and it was. After the first month, when you establish a routine and find your groove, it gets easier. We measured our KetoCal out ahead of time when we got our shipment. Then all we had to do was add water and mix it daily. The ketogenic diet is definitely worth a try. Just remember to take it one day at a time and keep your eye on the prize…seizure control!

~Krista

I was paid by Nutricia for my time to write this blog, however, my opinions are my own.

KetoCal is a medical food intended for individuals age 1 year and up, and is intended for use under medical supervision.

The ketogenic diet for epilepsy should be used under medical supervision.

Please note that this is one family’s report of their experience with the ketogenic diet and may not be the experience of others. Individual results will vary. Please discuss the potential benefits of the ketogenic diet with your healthcare provider.

To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.

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