patient name: Jonah Keith Norris
condition: down syndrome, autism and myasthenia gravis
In 2006, Kris Keith and Shelley Norris adopted Jonah, a 5-month-old boy with Down syndrome. Kris and Shelley had worked for years with the developmentally disabled population and knew the joy Jonah would bring to their family. What they didn’t know was that within his first few years, Jonah’s care team at Dayton Children’s would become part of their family too!
developmental pediatrics and beyond
In 2007, Jonah started seeing Eileen Kasten, MD in developmental pediatrics. Dr. Kasten worked with Jonah’s parents to coordinate care with all of his health care providers. She even helped find a pediatrician and dentist who work well with patients like Jonah.
“Dr. Kasten was always going above and beyond for Jonah. She helped hand pick his care team,” said Kris.
Dr. Kasten’s outstanding support continued when Jonah started having vision issues as a toddler. Dr. Kasten worked tirelessly alongside ophthalmology to help determine the root cause of Jonah’s issues. Eventually, he was diagnosed with myasthenia gravis, a neurological disorder that causes weakness in the muscles causing difficulty swallowing, double vision and unsteady walking. While it was a relief to receive a diagnosis, this also meant Jonah needed specialized care from more Dayton Children’s providers.
next steps in neurology
Jonah started seeing Gogi Kumar, MD in neurology to help care for his myasthenia gravis. Myasthenia gravis is rare: about 10 in one million people are diagnosed each year, and just 10 percent of those are children.
One of the ways to treat myasthenia gravis is to make the immune system less active. There are different ways to do this, and it can take some adjusting to figure out the right amount of treatment with the fewest side effects. Providers will adjust treatment so that the patient gets the greatest amount of strength with the fewest side effects.
Since Jonah was so young and had Down syndrome, figuring out the right treatment for him could be a little more complex. Dr. Kumar decided to tap her resources and reached out to colleagues across the country and at Dayton Children’s to find the best care possible for Jonah. Dr. Emmett Broxson, hematology/oncology provider at Dayton Children’s, treated Jonah with Mycophenolate, an immunosuppressant medication. That was a good start to Jonah’s treatment journey, and they started to see an improvement in his myasthenia gravis symptoms. After Dr. Broxton retired, Jonah began to see Jordan Wright, MD in hematology/oncology who adjusted his medication over the years until they landed on a medication, Cellcept, that has continued to work well.
Even with the medicine, Jonah still needed help from speech and feeding therapy for his swallowing issues.
“Jonah has seen many therapists at Dayton Children’s over the years and everyone has always been exceptional,” said Shelley. “The things he learned as a young child, he still uses today at age 17.”
ENT and Dr. Elluru
Over time, Jonah continued to see providers at Dayton Children’s for various health conditions. One of Jonah’s favorite providers is Ravindhra Elluru, MD, PhD. The first few times Jonah needed his ears cleaned, he needed to be put under sedation. With time, Dr. Elluru and Jonah built a trusting relationship and now Jonah no longer needs sedation for his ear procedures!
“Dr. Elluru is exceptional and works so well with kids with special needs,” said Kris. “We can’t say enough about how amazing all the providers at Dayton Children’s truly are and how much they really care.”
it takes a village…
Jonah has now been part of the Dayton Children’s family for 17 years.
“Everyone has become like family. But Dr. Kasten was always right there with us, every step of the way,” shared Shelley.
Dr. Kasten has worked to help Jonah and his family over the years in so many ways, but there are a few that stand out to Jonah’s family. Dr. Kasten coordinated Jonah’s medical procedures for the same time to save them trips to the hospital and unnecessary stress on Jonah. She sent out letters to colleagues to find other patients like Jonah to ensure his care was the most up-to-date, and she helped Jonah’s family find adaptive equipment (like a large stroller to use on hikes) as he grew.
“Dr. Kasten and all the providers at Dayton Children’s exemplify the importance of having a dedicated and compassionate health care team who is willing to go above and beyond to ensure their patients receive the best possible care,” said Kris.
Today, Jonah is a thriving member of his high school community. He enjoys listening to Bruno Mars, decorating the Christmas tree, attending high school, and road trips. Shelley and Kris attribute some of his success to the dedication and compassion of his Dayton Children's care team and much of it to Jonah’s strength and determination.