Carol: When you have a child with type 1 diabetes, you’re constantly on guard. Our son, Joe, was diagnosed at 22 months. He’s 17 now, and we’ve seen a lot of changes at Children’s Hospital and in diabetes care over those years.
We started our relationship with CHOP in the Emergency Department after our pediatrician sent us. The doctors weren’t as inclusive back then; now we feel confident asking any question. Joe was an inpatient for five days; now new diabetes patients stay only two days.
Joe: I was too little to remember any of that! My memories of CHOP are mostly of sitting in waiting rooms and appointments with my doctors and nurses. Luckily, I haven’t had to be hospitalized since that very first time.
Carol: After the initial diagnosis, there was so much to learn — how to calculate carbohydrates, how to calculate insulin, how to give shots. This was before the Connelly Resource Center for Families. All we had was a little table in a supply room.
After he was discharged, I became Joe’s shadow. I went to birthday parties; I was there for every preschool lunch. When he moved to elementary school, I trained the school nurse on both the basics of diabetes as well as our philosophy of treating Joe like every other child — just with a heightened awareness of what he needed to be safe and healthy.
Joe: I remember having to go to the school nurse every day for a shot. It was so much better when I was able to switch to the insulin pen. Then I could give myself the insulin I needed.
Advances in diabetes management
Carol: Diabetes management is lifestyle-driven. A child eats many times during the day. Each time, you need to count the carbs and figure the insulin. Technology has advanced since the beginning, too. Little kids weren’t recommended to wear insulin pumps, but they make life so much easier.
Joe: Getting a pump was great. I wear it all the time, unless I’m playing football. With the pump, I can eat pretty much anything. When I was younger, my mom would put a note on my lunch bag that listed the food and how many carbs were in each thing.
She’d even list the carbs for half a sandwich or half a banana, in case I didn’t finish everything. That helped me learn to figure it out by myself. Now, I eat the cafeteria food, if I want to. I look at the food and figure the carbs in my head.
I’ve learned how to manage my diabetes pretty well. I’ll be a senior at Episcopal Academy. I’m 6-foot-5, 210 pounds, and mostly I play defense on the football team.
During practice and games, I check myself on the sidelines, at halftime and time outs. If my sugar is high, I deliver insulin. If it’s low, I sit out for a little bit and drink some Gatorade. I hate to sit out, but my coaches understand I need a breather when my sugar is low.
Diabetes care and support
Carol: We’ve seen different diabetes educators and endocrinologists over the years. Advanced practice nurse Heather McKnight-Menci, MSN, CRNP, is who we see now, and she’s terrific. She’s respectful of me, as a parent, and of Joe, as a teenager.
When he was 16, she brought up drinking and drugs. First, she asked me, “Is it OK to have this conversation?” And she explained that she didn’t want to teach from fear, with only warnings about how drinking can be dangerous for a diabetic.
She started by reminding him that he can’t legally drink until he’s 21, but then said, “In case you do happen to drink, let’s talk about how to do it safely.” Joe sat up and paid attention.
Joe: I’m not into partying; I’m into sports. But it was still good information to know. There’s been a gradual transition over my years of coming to CHOP. At first, the doctors and nurses talked mostly to my mom, and then she would explain things to me. Now, they mostly talk to me, and explain things directly. The conversation on drinking was just one example.
Carol: Joe is our hero, and he works hard at being healthy. We want him to be empowered as he plans for college, and we feel that CHOP is a partner with us as we move toward that goal. He’s 99 percent there.
Joe: To be honest, without my mom, I wouldn’t be as good at managing my diabetes. She’s the best.
By Carol and Joe Flannery, February 2012