Personalized medicine offers hope for Kaden

Four-year-old Kaden Washington loves to snuggle with his parents Kellie and Jesse and baby brother Kenan. Because of developmental delays resulting from epilepsy, he is unable to speak or walk, though he has no trouble communicating through facial expressions. That’s how his mom knows his favorite song is “I Won’t Give Up” by Jason Mraz:
I won’t give up on us
Even if the skies get rough
I’m giving you all my love
I’m still looking up, still looking up
“Kaden has been through a lot, but he’s got a big heart and is a tough little guy,” says Kellie. “When we get tired and frustrated, Kaden gives us strength to go on fighting for him.”
Kaden has intractable epilepsy, meaning that his seizures have not responded fully to standard anticonvulsant drugs. He was just four months old when he experienced his first seizure, and underwent neurological tests at an area hospital that indicated he had epilepsy. Kaden was given medication to stop the seizures, which initially affected just one side of his body.
By 11 months of age, Kaden was experiencing infantile spasms, a type of seizure that affects the head, neck, shoulders and arms. His parents brought him to Ann & Robert H. Lurie Children’s Hospital of Chicago, where diagnostic tests ruled out structural abnormalities in his brain and metabolic issues as the cause of Kaden’s seizures. The root cause of his seizures remained unclear, and his neurologist treated him with the hormone ACTH and steroids, a treatment that can be very effective. Kaden’s seizures responded, but were not completely controlled. 
Eventually Kaden developed more serious forms of seizures, which occurred as often as 12 times a day. He began care at Lurie Children’s Epilepsy Center under John Millichap, MD. Kaden was prescribed anticonvulsant drugs and was started on a ketogenic diet, which provides relief from seizures in many patients. Unfortunately, these interventions were only partially effective.
“Often it’s a case of adjusting the dosage of the anticonvulsant medications to find the right balance,” says Dr. Millichap, who recently started Kaden on a new medication in addition to his steroid treatments.
Adding to Kaden’s challenges are other conditions that contribute to his developmental delays. He has multiple food allergies, and is also seen by a specialist in the Division of Gastroenterology, Hepatology and Nutrition, and  needs to use a feeding a tube because he has trouble swallowing due to an  allergic condition.
“Dr. Millichap has been phenomenal with Kaden and with us,” says Kellie. “He’s called us at night to talk about Kaden, and he responds quickly to phone calls when we have concerns. He’s more than just Kaden’s doctor to us. In fact, we have a great relationship with the nurses and everyone else on the epilepsy team. They’ve all been important in Kaden’s life.”
Recently, Kaden and his parents underwent genetic testing at the hospital, which revealed a rare gene mutation that may be the cause of his seizures. Dr. Millichap has consulted with researchers studying the gene, and epilepsy specialist Sookyong Koh, MD, PhD, who was recently named Director of the Neurobiology Program at Lurie Children’s Research Center, has expressed interest in initiating a research study to investigate this gene as it relates to epilepsy.
“Right now we have more questions than answers,” says Dr. Millichap. “With basic and clinical scientists working together studying this  genetic variation to see if and how  it causes Kaden’s epilepsy, we might be able to devise an individualized treatment for him. The outlook for children like Kaden is improving thanks to research, but funding and philanthropic support is essential to discover not only new drugs to control seizures, but to find ways to stop epilepsy from occurring in the first place.”
Kaden’s mom is happy to report that there has been a marked decrease in the frequency of his seizures, and that some days he is seizure free.
“As a parent, your hopes and dreams are to have a healthy child, one that can develop at a normal pace,” says Kellie. “Those dreams changed when Kaden’s seizures started. We would love to hear him say, ‘Mommy and Daddy, I love you,’ and we’re still hopeful that will happen. Our hope is that research scientists will come up with a cure for epilepsy so Kaden and children like him will be able to develop to the best of their potential.”