Search
Kyle and the Ketogenic Diet
Kyle is 9 years old and was born with the FoxG1 syndrome. He lives with his parents and a 5-year-old brother near Stuttgart. The FoxG1 gene is responsible for the development of the brain in the organism.
In this report, Mama Tina tells the story of how Kyle came to follow the ketogenic diet
Kyle's profile
Name: Kyle
Country: Germany
Diagnosis: Epilepsy, Fox G1 Syndrome
Ketogenic Diet since: 2019
Favorite Food: Salmon with spinach and cauliflower, ketogenic gummy bears
What is FoxG1 Syndrome?
The FoxG1 gene is responsible for the development of the brain in the organism. Children with this syndrome have extremely poor sleep patterns, which means they often take a long time to fall asleep and wake up after a few hours for an extended period. Kyle did not sleep through the night for the first 6 years. Additionally, children with this syndrome have muscle hypotonia, meaning that their muscle tone does not increase as in other children. This affects not only the muscles used for turning and sitting up but also significantly impacts the swallowing muscles, making eating a challenging task. Kyle can eat pureed food and fortunately does not have a feeding tube like many other FoxG1 children. It all began with an epileptic seizure.
How all began
When Kyle was 4 years old, he had 2-3 minor seizures, after which he was discharged from the hospital each time after a few days. At that time, he did not need medications typically taken daily for epilepsy. In the following years, the seizures remained absent. It is challenging to determine whether it was due to the rigid daily routine, but children with FoxG1 syndrome require regularity, good sleep, sufficient hydration, and regular digestion.
Kyle remained seizure-free until his 8th year. When he suffered from an infection accompanied by high fever and vomiting, a series of seizures occurred. He was in a status epilepticus, meaning the seizures occurred at regular intervals, and doctors fought for his life in the intensive care unit. After a few days, the series was interrupted, and he stabilized. We were discharged with the first anti-epileptic medication, but the next infection did not take long to arrive, and Kyle was once again in a status epilepticus. With an increased dosage, we returned home, but only a few weeks passed before we had another hospital stay. Medication No. 2 was added. Despite the two medications, life did not improve. Kyle vomited his food more frequently and slept very restlessly.
I'm so glad to have made this decision and tried the ketogenic diet with him. More medications would certainly not have brought us this quantum leap in development.
Kyle and the Ketogenic Diet
Many years before, I had read a book about the ketogenic diet in a girl that fascinated me a lot. I suggested trying it with Kyle to the medical team. A few weeks later, we started the ketogenic diet. On the second day, Kyle was in 'ketosis,' meaning his body had undergone a metabolic change. Children with FoxG1 Syndrome often have difficulty making or maintaining eye contact. I had really tried for years to get his attention, whether by wearing bright red lipstick or trying to hold his head and make eye contact, but it was to no avail. On the third day of feeding, Kyle looked directly into my eyes and watched me. His hands suddenly felt so warm. Kyle had never gained proper weight, and the whole eating situation was always quite challenging. He couldn't chew, the food had to be pureed very finely, and even the smallest potato peel would irritate him to the point where I often had to clean the mess from the floor. It wasn't pleasant, but unfortunately, it was part of the syndrome. In addition to the poor food intake, there was also his very high energy level. The child was practically always in motion. After introducing the ketogenic diet, we took a break on the clinic's lawn, sitting on a picnic blanket, and Kyle toppled over while sitting. He started to watch the passing clouds and was completely fascinated. Moreover, in the first year of the ketogenic diet, Kyle finally broke through the 'sound barrier' of 16 kilograms and gained weight. After 9 months, the doctors suggested reducing his medications. Kyle is finally making progress, and the best part: we are seizure-free
The interview with Mama Tina
Question 1: How were your first days and weeks when transitioning to a ketogenic diet?
Kyle was very stable in ketosis from the third day of the transition, and he enjoyed the food. We had selected his favorite dishes and transformed them into a ketogenic version with the help of the nutritionist at the clinic. Kyle usually has a vegetable-meat puree in the afternoon and a semolina porridge with fruit in the evening. For breakfast, he usually only has a drink, and we've prepared a shake for him. We use seasonal fruits, MCT oil, milk, coconut milk, and almond butter for the shake.
Question 2: What positive effects have you observed with the ketogenic diet?
Before, he was always very fidgety and constantly in motion. From the moment he entered ketosis, he became calmer and more attentive. He watched me as I walked through the room in the clinic, and during meals, he looked into my eyes for the first time for a long while. That was a really great moment. Communication has also become easier for me since he looks at me when I talk to him and interacts more with me.
Question 3: What initial mistakes can people avoid when starting a ketogenic diet?
A ketogenic diet must be introduced under medical supervision. You should also be closely guided by the staff on what to do if the child is ever sick and not eating much. For example, how many carbohydrates to give or what to do if ketosis rises too high. I feel very well taken care of at our clinic, and I always have a point of contact.
Question 4: What are your and Kyle's favorite keto- dishes and foods?
My absolute favorite is MCT oil. Sometimes, Kyle has a hard time entering ketosis in the morning, so I like to add MCT oil to his shake. I've read that it's very good for brain energy and is also believed to have a preventive effect on Alzheimer's. I make Kyle's semolina porridge with coconut milk in the evening. That's one of his favorite dishes.
Question 5: Were you already familiar with Kanso products before the collaboration?
We had already received a recommendation for MCT Fiber from the clinic because Kyle, as a wheelchair user and a poor drinker, often suffered from constipation. The fibers solved this problem quite quickly.
Question 6: How do you like our products? Which ones are particularly good?
Our absolute favorites are the products with cocoa butter. Kanso Keto CacaoBar makes the semolina porridge taste like chocolate, and KetVit makes the morning shake chocolate-flavored.
Question 7: What do you not like as much about the ketogenic diet?
Actually, I can't say anything negative because for a child who can only eat pureed, finely blended food, it's not a big adjustment. The high percentage of oil in his food gets mixed in, giving the food a creamier consistency. If it's ever too liquid, I use KetoBiota, and it's perfect for on-the-go, as it's easy to draw with a syringe and give it directly into the mouth. It causes much less mess. I had imagined that implementing the ketogenic diet on the go would be more challenging, but I was pleasantly surprised."
Interview with an alien
In this article, you will learn how the rare genetic disease GLUT1 works from the unique perspective of an alien researcher. Through an insightful interview with Greta Caravita, one of the few people on Earth affected by GLUT1, it is explained how this disease affects daily life and what adaptations are necessary. The viewpoint of an alien offers a special and fascinating opportunity to understand what living with this condition conveys.
Starting the Keto Diet: One Step at a Time
When you receive a diagnosis of a rare disease for which there is no medicine to make it disappear, you feel like you're locked in a dark room. But when you're told that there's a therapy that can mitigate the effects of the disease, that's when the light returns...