Grace was born in January 2006, our first child. At four months of age, we started noticing her making sudden jerking motions. Soon after she was diagnosed with a rare form of Epilepsy called Infantile Spasms and she was later diagnosed with Lennox-Gastaut Syndrome. Over time Grace’s seizures have changed, but our reality is that she still has them every day. Grace’s current course of treatment for epilepsy includes Keppra, Onfi, Felbatol, and Epilodex. Past treatments included Vitamin B-6, Clonazepam, Acthar (ACTH), Topamax, Depakote, Felbatol, Zonegran, Sabril (Vigabatrin), Lamictal, Banzel, Vimpat, Neurontin, Diazepam, Prednisone, and the Ketogenic Diet.
In addition to the medications to treat her seizures, Grace also had a corpus callosotomy in 2010. The surgery helped reduce the drop seizures she was having. Grace also had surgery in July 2013 to implant a Vagus Nerve Stimulator (VNS) which has decreased the impact of seizures on her quality of life significantly.
In 2015 we added monthly IVIG therapy to boost Grace’s immune system. Initially, the hope was to do all we could to prevent her from becoming sick. (Sickness often brings with it increased seizure activity.) What we ultimately found through immunologic testing is that Grace has a number of holes in her immune system and her body needs to borrow immunity from others. (Please learn why vaccinations help protect the more vulnerable populations in our society.)
It’s not just epilepsy that Grace faces. There are many medical providers who support Grace’s care.
Grace’s epilepsy treatments are managed through the Minnesota Epilepsy Group at the Children’s Hospital of Minnesota in St. Paul, MN. Grace’s medical team also consists of an Ophthalmologist, Gastroenterologist, Nephrologist, and Dietician at the University of Minnesota Masonic (Amplatz) Children’s Hospital, a Physiatrist at Gillette Children’s Hospital, an Immunologist at Midwest Immunology, a Urologist with Pediatric Surgical Associates.,an Endocrinologist at Blank Children’s Hospital, and we follow with Pediatric Cardiology, PC.
Grace receives Occupational and Physical Therapy at ChildServe. UnityPoint at Home provides home health nursing care during our work hours. In addition, our amazing Pediatrician at Des Moines Pediatric and Adolescent Clinic (DSM Peds) helps bring all the pieces together.
Grace enjoys exploring the world, flowers, lights, music, bowling, and sparkle. She does ballet with Dance Without Limits, plays baseball sponsored by the Kiwanis Miracle League, and loves to swing thanks to Make-a-Wish Iowa and ride her bike thanks to Variety Club of Iowa.