When nothing seems to be working, you look for alternatives. The search may lead to an old approach.
Debbie and Noah Jensen, Eagle River
Such is the case for Noah Jensen, age 13, Eagle River. Jensen has a history of suffering from seizures lasting for days at a time. By connecting him with prescribers of the ketogenic diet, a revived treatment for seizure disorders, his life has changed for the better.
"This diet has been everything to us," said Debbie Jensen, Noah's mom. "It has enabled Noah to live and have a more normal life. He's no longer so medicated that his sparkling personality disappears."
Jensen was born with spina bifida, a condition affecting spinal cord development. The condition can have associated seizures that may not be sufficiently controlled by medication. Spina bifida also can be associated with learning disabilities, affect language development and impair organ function and leg movement. An electric wheelchair allows Jensen to be more independent.
Health complications have been frequent for Jensen, said his mom. "After many emergencies, it became apparent the medications were not working, and we were getting desperate."
A life-flight to the Marshfield hospital connected the Jensens with Marshfield Clinic Pediatric Neurologist Monica Koehn, M.D. Dr. Koehn and her pediatric specialty colleagues made medical care recommendations that included the ketogenic diet.
"The ketogenic diet, which has its origin from biblical times, is high in fat and very low in carbohydrates and proteins," said Dr. Koehn. "It forces the body to generate ketones rather than glucose as the main energy source. The degree to which the ketones are generated, termed ketosis, produces the beneficial effect of treating epilepsy. It can be used in patients of any age, with any type of epilepsy and with almost any other neurologic condition."
The diet requires parents and caregivers to dedicate extra time for food preparation each day, Dr. Koehn said. "It can be manageable for all types of families."
Teamwork between Jensen's family and his health care team makes the diet work. Marshfield Clinic medical specialists in childhood neurologic and sleep problems, nutrition, kidney and respiratory conditions, and muscle and joint function all have roles in his care. He also sees Pediatrician Joanna Gudel, M.D., at Marshfield Clinic Minocqua Center for regular check-ups and acute illnesses.
Dietitian Tammi Timmler, Marshfield Clinic Marshfield Center, works closely with Debbie to develop ketogenic diet menus for Jensen. "Noah likes chicken nuggets, but he can't have the breading used in a typical recipe," said Timmler. "I substitute egg whites and roll the chicken breast in parmesan cheese instead."
Each meal includes a serving of a high fat food such as heavy cream. "In general, ketogenic diet menus should not include regular carbohydrate-containing foods such as bread, pasta, rice, pies, cookies, corn, peas, potatoes, juice or candy," said Timmler. "Noah has three meals a day and two snacks from menus I calculate and develop with Debbie. She does the preparation."
The biggest potential side effects of the ketogenic diet are dehydration, kidney stones, and slowed growth and development, said Dr. Koehn. "Because this is a high fat diet, it may affect the child's heart and kidney health over time," she said. "Our medical team continually evaluates how successful the diet is in managing the seizures."
Fewer seizures for Jensen mean less seizure medication. This leads to improved learning and development and doing more of his favorite things.
"He won a school talent competition for singing, he enjoys fishing and hiking trails with his cousins and is a star Wii™ bowler," said Debbie. "The medical care and this diet have made all the difference. We know we put our trust in the right place."