Local Kids with Type 1 Diabetes Share Their Stories
August 31st 2012 · 1 Comment
The story of Diabetes is very different for everyone. Two of the young people interviewed, Olivia and John, were diagnosed with Diabetes when they were 9 months old so they virtually know no other reality than that of living with the disease. Twenty-year -old college junior, Gabrielle Tantillo, on the other hand, remembers when she became ill.
“I’ve had Diabetes since I was four and a half,” she said. “I remember always having to pee a lot and drinking gallons of water. I was with my baby sitter during the day because my mom was working in Syracuse at the time. My mom thought I had a bladder infection and had my sitter bring me to my pediatrician, Dr. Mahoney, at Dr. Slocum Dickson. Within five minutes he was talking to baby sitter telling her that he had bad news. He diagnosed me with Type 1 Diabetes.
“The baby sitter started crying and called my mom who sped home from Syracuse crying. I remember being very confused. They took me right away to St. Luke’s Hospital and my mom arrived just as they were putting the IV in my arm. It was not fun.
“My life changed after that. It is something I have to accept and live with. There is no vacation from Diabetes. ”
Indeed, whereas Type 2 Diabetes can often be reversed by lifestyle changes or managed with oral medications, Juvenile Diabetes is insulin-dependent with injections delivered up to twelve times a day.
Blood sugars too low, with an excess of insulin, cause insulin reactions which can lead to loss of consciousness, seizure and death. Blood sugars too high for extended periods cause ketoacidosis, nausea, vomiting, eventual organ failure, and death. Blindness, wound ulcers and amputations are common if the disease is not managed well. Managing the disease is a life-long battle for balance and well-being.
Modern day testing involves a finger prick, putting the blood on a test strip and a reading by a monitor. These modern monitors are computerized and linked to the pod or pump, the insulin delivery system, worn by those who are insulin-dependent. A calculation is made by the device based upon the blood sugar level, and the dose, or bolus, is administered to the individual. There is also a fluctuating basal rate of insulin that the pod delivers at lower levels to keep the patient supplied with this vital hormone.
Delvena “Deli” Rogers, mother of twelve-year-old Olivia, recalls delivering her daughter’s bolus ‘on the fly’ when Olivia was a toddler. “I would point the monitor at her as she ran around the room to give her a bolus.
“It was terrifying in the beginning. The technology has really come a long way and I am really grateful for the support we’ve had from the community. I remember what a great help Elizabeth Tantillo was when Olivia was first diagnosed. Her confidence and support were immeasurable.
“The nurses in the school were fantastic. They could take a look at Olivia and know that something just wasn’t right. I am so grateful to them for watching over her.”
Children with Diabetes ideally test their blood sugar levels five to seven times a day. Parents often check their children in the middle of the night as the prolonged periods of time without food or exercise can result in dangerous shifts in blood sugar levels. The children become so accustomed to the testing that they will offer their finger for pricking without really waking up.
Gabby has always managed her diabetes well and says that in her group of friends she has always been the responsible one, “kind of the mom of the group, because I’ve always had to pay attention.”
It is a trait seen in all young people with Diabetes. There is an attention to detail and a seriousness beyond their years that these young people tend to carry. They have to be mathematicians, physicians, personal trainers, and dieticians all rolled into one.
Twelve-year-old John Slawson, who sees himself as a future NHL star, can calculate the cryptic conversion of carbohydrate on a box of food in the supermarket to an insulin bolus with as much ease as most kids refer to a video game descriptions. John knows no life other than monitoring his food intake, exercise regimen and insulin dependency.
He first tested his own blood when he was three years old and originally injected himself with insulin. John recently converted from using an insulin pump to a ‘pod’ which he wears on his upper arm. He likes the pod better as it has no tubes to get in the way of his active life.
His mother, Melissa, has maintained the vigilance that all mothers of children with Type 1 Diabetes must have. She rolls her eyes when John refers to lapses in his needed behaviors.
But both Olivia, who also wears a pod, and John carry their monitors with them at all times. “It’s like my purse. I have all of my supplies in it, including my monitor and test strips. But now instead of a sugar supply I always have money to buy something if I need more sugar.”
Gabby Tantillo says, “I’ve gone from taking a small amount of insulin when I was young to lot of insulin when I was in my teens to a lot less now. Puberty was a roller coaster. My body has stabilized now. You have to balance insulin and exercise. It’s always different. Every day was different. I played sports for three seasons during high school. I was Varsity Captain for 3 years in field hockey. I also played lacrosse, had a job, played basketball and was in the musical my senior year.
“I have to say, it’s hard to lose weight when you’re on insulin so my decision to go back into basketball was great. I’m glad I did it.
“At field hockey practice my coaches even carried my stuff. They were great. I would test my blood a lot during practice to make sure. Most of the time, if I would get into trouble I could feel a sensation and could tell. But sometimes you can’t tell and it’s too late. I would get real shaky, disoriented, can’t concentrate, get aggravated real easy or get blurry vision and have to be taken out.”
John, on the other hand says he gets muscle cramps while on the ice and knows that its time to adjust his intake.
Olivia, also a field hockey player, says that her coaches can tell if she’s not playing up to her normal game and will call her out to administer a needed dose of sugar if it gets low. “I get shaky or real hungry.”
Environmental changes as subtle as changes in humidity or temperature can trigger metabolic shifts in the individual which have to be accounted for in treatment. Diabetes creates a constant demand on the body and constant need for vigilance.
Twelve-year-old Olivia noted that living with Diabetes makes her a bit more responsible than her friends and that, “I have to add some time to do things I have to do. Like when my friends and I go to lunch I might have to stop and change my bolus. They know it is important and we have to do this. They’re fine with it.”
Gabby, the twenty-year-old says, “I have had the most amazing friends. My friends have taken the time to learn about my disease. My friends know how to test my blood and put insulin in my pump. They know how to change my pump site. They are not scared to talk about it.
“In fact two of my friends and I won first place for two years in the middle school science fair project we did on Diabetes. We would all eat a food, test our blood sugar levels an hour later and gathered the results on how different bodies work.” Though Gabby has a history of calculations, dietary attention and a scientific bent, she says she has no interest in medicine for her future. Right now she works in event planning and development work for St. Luke’s Hospital.
Gabrielle says, “I’m on my own now that I’m in college. And over the summer I came to realizations about my health. I just wasn’t feeling good in general. I would forget to get my insulin and knew I wasn’t eating right. One day I said I’m just not going to do this anymore. So I reviewed blood sugars and my insulin intake over a period of time. I decided to eat really healthy and to remember to do all of the things I am supposed to do in terms of taking care of myself. I want to live my life to the fullest. “
As far as her future she says she worries about the same things that everyone else in her age group. “ Jobs are so competitive now. There are thousands out there without jobs. But I am optimistic about it. I am majoring in Spanish and Environmental Policy but I have no idea about what I want to do. I hope to do good things in my future. I will be studying abroad in Argentina for 12 weeks. I know my parents will be beside themselves but I’m sure I will be fine and it will be really great.”
Olivia says she wants to be either a pastry chef or a marine biologist. “I want to swim with the dolphins.” And she probably will.
As far as a cure for the disease, Gabby says she’s a little discouraged as she recalls her nurse practitioner saying that by the time she gets to college there will be a cure. “At this point, she says, “A cure is so close they seem like they are only are a couple of steps away. But the pharmaceutical companies are making so much money on it, I mean so much money, I think they might delay it.”
Melissa Slawson commented that they had been told the same thing by their physician, that by the time her kids were in college that there will be a cure. “It is amazing what progress has been made. I know they are really close.”
Slawson closed by saying, “Awareness is great. Walks and runs are great. What we want is a cure.”