Paediatrics

 

Ketogenic diet transforms life for boy with intractable epilepsyn


For nine years, William Allan Sterling rode a scary roller coaster of epileptic seizures that left him confined to a wheelchair and barely able to walk or talk. Now, nine months after starting a medical diet prescribed by Chalongchai Phitsanuwong, MD, William is seizure-free and enjoying a significantly better quality of life.

“I’m getting to know my son for the first time, and I’m starting to see the young man he will become,” said his mom, Lori Tucker.

Born prematurely at 26 weeks with cerebral palsy, William’s seizures started when he was three months old, gradually increasing until they occurred constantly day and night. Because he would drop and hit his head during a seizure, he had to wear a soft helmet, was bound to his wheelchair or bed, and needed 24-hour supervision. A paediatric neurologistprescribed several anti-seizure medications, but none seemed to work. Surgery was out of the question because the boy’s seizures were not localized to a particular area of his brain.

In December 2014, after William fell and cut his ear, Tucker learned about the ketogenic diet and was referred to Dr Chalongchai Phitsanuwong, a paediatric neurologist and epileptologist specially trained in this diet. He recently had joined the Level 4 Pediatric Epilepsy Center at the University of Chicago Medicine Comer Children’s Hospital -- now one of only three hospitals in Illinois offering the ketogenic diet for children. William became Dr Phitsanuwong’s first patient at Comer Children’s to try this medical diet.

Tucker said: “Dr Phitsanuwong gave me a lot of information and said he thought William was a good candidate for the diet. Since nothing else had worked to reduce William’s seizures, we decided to give it a try. I couldn’t keep watching my son deteriorate.”

Dr Phitsanuwong said he admired Tucker’s attitude even in the darkest times. “She’s a fighter, and she believed William would get better one day.”

The Pediatric Epilepsy Center offers a variety of ketogenic diets, including the classic ketogenic diet and a Modified Atkins Diet. Ketogenic diets are widely accepted and effective dietary regimens prescribed as a treatment of seizures and traditionally offered when medication alone fails to control seizures.

“While they may not be effective for every child,” Dr Phitsanuwong said, “We do know the diet’s high-fat, low-carbohydrate content causes the production of ketone bodies. The process of ketosis is believed to have an anti-seizure effect.”

The ketogenic diet consists of a high percentage of calories from fat, with an adequate amount of protein and a low percentage of carbohydrate intake, depending on the type and ratio of the diet. Experts do not fully understand how the ketogenic diet controls seizures.

Customized diet
The diet is customized to each child’s calorie requirement and nutritional status. Parents must follow instructions precisely for the best results. For example, if a child consumes too many carbohydrates, his or her body may not produce ketone bodies and the diet will not work.

To help families manage their child’s diet, a multidisciplinary team at Comer Children’s provides highly specialized care and consultation, offering the combined expertise of paediatric neurologists, paediatric epileptologists, a ketogenic dietitian, paediatric neurology nurses, a social worker and a case manager.

To begin the diet, William stayed in the hospital for five days in January 2015 under the care of Dr Phitsanuwong and his medical team. His seizures were reduced by 50% by the end of the week, and disappeared completely after six weeks on the diet.

While the diet can be challenging at first, Tucker said: “Once we saw the difference in William, it motivated us to keep going. Now the diet is easy and a part of our life.”

Today, William is out of the wheelchair for increasing periods of time and is able to walk, run, and speak in sentences – activities his family never thought he would be able to do.

“He’s a different kid now,” Tucker said. “He’s happy, energetic and wants to do everything on his own. His goal is to play baseball, just like his older brother. It’s almost unbelievable how far he has come in such a short time under the diet.”

Dr Phitsanuwong reports the majority of his patients currently on the ketogenic diet have had at least a 50% reduction in seizure frequency. Despite the effectiveness and a relatively low occurrence of serious side effects, the physician cautions parents not to start a child on this
medical diet without a neurologist’s specific recommendation, instruction and supervision.

“What keeps me going is watching how this diet can change lives,” Dr Phitsanuwong said. “It’s exciting to see William do things he couldn’t do before. He is more alert and engaging, learns more, and has a remarkably better quality of life, which makes his whole family and everyone around him much happier.”

 

 

Date of upload: 8th Jul 2016

 

                                  
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