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
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.
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