Trip to Cincinnati Children's Hospital

Ever since we discovered Grant's epilepsy (that will be subject of another post), we have wanted the best possible care for him, as any parent would want for their child. The problem we had was this was uncharted territory for us. We had never seen a neurologist or dealt with epilepsy before. The closest we had come to it was anecdotal evidence of friends who had family members or others that had it. I honestly thought when someone had a seizure it was only the grand mal type of seizure. I did not realize that there are many types of seizures and what they involve.

After our initial visit with the pediatrician and neurologist in Atlanta, my wife and I started doing some research. She is from Cincinnati and we both knew that Cincinnati has an excellent children's hospital. What we discovered was Cincinnati Children's Hospital (CCH) is ranked 4th in the country for pediatric neurology, while Children's Healthcare of Atlanta (CHOA) is ranked 32nd. CHOA is a very good hospital and has an excellent network of doctors. But since we were in the dark and wanted the best care, we decided to take the trip to Cincinnati. Making this choice was a pretty easy one for us since my wife's family has numerous connections to medical community in Cincinnati. Another major contributing factor was that my wife used to nanny for a neurologist in Cincinnati who coincidently is the director of the Comprehensive Epilepsy Center at CCH. It seemed the stars had aligned for us and Grant.

We were able to get an appointment in mid-May, a week after our youngest, Emery was born. Grant and I made the drive to Cincinnati the day before Mother's Day. We stayed at my wife's parents’ house. Our appointment was on the following Tuesday. I had also lined up a couple job interviews in the Cincinnati area. Since I was unemployed, I figured if we needed to move to Cincinnati for the family's sake, why not see if I could get a job first.

My wife's stepmother went with us to the appointment. She is an RN and her medical knowledge and presence at the appointment brought me an extreme feeling of calm and comfort. Thank You Linda!! The Dr. we met with is the Co-Director of the Epilepsy Surgery Program. We met with him not because Grant needs surgery, but because the Director suggested, after talking with Rylea and I, that he would be best considering his type of seizures and other symptoms he was having. As soon as the Dr. came in he put me, my mother-in-law, and wife (who was on speaker phone) as ease. He answered every one of our questions, took the time to explain things to us that we did not understand, and showed us on Grant's MRI the cortical dysplasia lesion and its location. We met with him for nearly 3 hours. We left there with a printed plan of action for the next the three months, contact numbers, prescriptions for medication and therapy evaluations (speech, occupational and physical). Most importantly we left there with a sense of direction and a little bit of hope. 

Grant's next visit to CCH will be in August. During that visit he will have a 24 hour video EEG and a sleep study done. These will take place on two separate visits. We are still in a discovery phase and the ground hasn't really settled below our feet. But at least we have gone from being stuck in thick mud to trudging through a swamp. We will make it to dry land and the light ahead but it will take time.