Vigilance and commitment are words that often describe families of children with a chronic illness. And for the Kruk family of Hope, NJ, their 22-month-old son’s incredibly precise and restrictive diet has required both.
Tyler was diagnosed with tuberous sclerosis, a genetic disorder that causes non-malignant tumors to grow on the brain and other organs and can result in daily seizures. His family, together with physicians and staff at Goryeb Children’s Hospital, knew they needed to control Tyler’s seizures for his brain and body to develop and function properly. Enter the ketogenic diet, a rigorous diet that emphasizes high fat to force the body to burn fats rather than carbohydrates to treat difficult-to-control epilepsy. A typical meal for Tyler is about 15 grams of chicken, 4 grams of pears, and 25 grams of heavy cream. About 75 percent of Tyler’s daily consumption is heavy cream, as the family always has a bowl of whipped cream prepared.
While the ketogenic diet requires 100 percent attention, the Kruks have witnessed significant improvements in Tyler’s cognitive and physical abilities and increased attention and focus.
The following was written by John and April Kruk for Goryeb’s 10th anniversary. They describe their son’s condition and their experiences with Goryeb Children’s Hospital:
From the Kruk Family
Tyler was brought to Goryeb by ambulance at 4 months of age due to a seizure. After only a few hours we had a suspected diagnosis of Tuberous Sclerosis, a very rare genetic condition that causes tumor growth in multiple regions of the body. Many children with this condition experience months of testing before they get this diagnosis and, thanks to Dr. Rajeshwari Mahalingham, Tyler was able to get the treatment he needed from day 1. Although the first and second lines of therapy (Vigabatrin, ACTH injections and various anti-epileptic drugs) did not completely eliminate the seizures, they helped dramatically.
It was almost a year from the diagnosis that we tried the ketogenic diet to eliminate the seizures and improve his cognitive abilities. After only a few short weeks of being in ketosis, it worked. Tyler has been seizure free for months and is able to enjoy the life that daily seizure activity had made so difficult for him. Many of Tyler's stays at Goryeb involved multiple days of EEG's, MRI's, CT scans, and many other tests. Having the kindness and attention of the staff really helped make each stay not only bearable, but a positive experience. Tyler really enjoyed having staff come in with guitars and sing while he was having his blood taken or IV removed. There are so many people and kind acts that got Tyler through some very difficult times, but what made the biggest difference was his dietitian, Lindsay Hammond. She not only assisted in getting Tyler into ketosis very quickly, she takes our calls at any time of day and sends us new diets continuously. Whenever Tyler has spiked a fever or needed a special medicine, Lindsay would make sure we adjusted the diet properly to keep Tyler from slipping back into a pattern of daily seizures. With her guidance, along with the entire pediatric neurology and ketogenic diet team, Tyler is able to stay in regular daycare with other children in his age group. Even though he is behind in his abilities, we still see progress everyday and are so thankful for the resources available to him at Goryeb.
John and April Kruk