Paediatric Diabetes Clinic: Helping parents and children overcome the disease

695

For the most part, 16 year old Jamie Moore is a pretty normal teenager. She plays sports, dances and hangs out with friends. But unlike her friends, Jamie also has to take regular insulin injections to help manage her Type 1 Diabetes.

“It can sometimes be hard,” says Jamie. “I don’t always get to eat what I want and I’m sometimes late or I have to stop what I am doing in the middle of class because my blood sugar gets low and I have to eat. But my family, friends and even teachers have been really supportive. They are more aware of my condition and what I need to make sure I am functioning.”

Jamie was diagnosed with Type 1 Diabetes when she was only five and a half years old. Despite having no family history of the condition, she joined the over two million Canadians already living with the disease.

“We suspected something was wrong with her,” says Jamie’s father, Glen Moore. “She complained of feeling sick, she always had to go to the bathroom and was always thirsty and then she got stomach pains; so we were expecting something. But still, diabetes was a bit of a shock.”

Helping Jamie and her family learn to live with the disease became the task of Markham Stouffville Hospital’s Paediatric Diabetes Clinic. “Our job here is to educate families, who have children with Type 1 Diabetes, about the disease and give them the tools and skills to live healthy, normal lives,” explains Julia Scott, Vice President of Clinical Programs & CNE at Markham Stouffville Hospital.

The clinic provides parents with information about Type 1 Diabetes and helps dispel the myths surrounding the disease. It also provides support to parents who sometimes feel stigmatized that their children have become sick with an incurable illness.

“One of our main objectives here is to make sure parents understand that this is not their fault,” says Alanna Landry, a Registered Nurse and Paediatric Diabetes Educator. “There are a lot of misconceptions parents have that they could have prevented this from happening by not giving their kids sugar, or moderating their diets, but that’s all false. This would have happened anyways.”

The clinic provides parents and children with access to programs, services and social workers who help guide families as they begin to adapt their lifestyle to living with a child who has diabetes.

“Learning how to accept and deal with the diabetes and move forward without disrupting the family or child’s life is not easy, but the majority of people do it,” explains Dr. Robert Ehrlich, medical director of the Paediatric Diabetes Clinic and Paediatric Endocrinology Clinic at Markham Stouffville Hospital. “We try to tell parents that their children can live perfectly normal lives. The biggest and most difficult hurdle for them is the psychological and emotional adjustment they have to make to the fact their child has developed a lifelong chronic disease. The families that overcome this hurdle and can adapt and accept it are the ones who do the best.”

“Initially the support we build is really the relationship we create with these families,” says Landry. “We provide the initial education upon diagnosis as well as ongoing education throughout the life of the child until they turn 18 years of age. We also provide 24 hour call support on urgent issues for our families and opportunities for social support through a variety of events with other families who have children with diabetes.”

The clinic sees over 400 families each year that have a child, or children, with Type 1 Diabetes. Parents and children are advised on proper nutrition and foods that can be eaten, as well as given advice on how to structure the child’s eating habits to best manage the disease.

“Your life becomes a little more structured as an individual and family when you have a child with diabetes,” says Moore. “But you have to make life as normal as possible for your child and that’s what we do with Jamie. She plays sports, she dances, and we go on trips. Yes, we have certain things we have to do every day, like take a needle or monitor what Jamie eats, but we try to keep her and her sister normal teenagers.”

The clinic also encourages teens like Jamie to take on a mentorship role with new patients who have just learned they have diabetes. This creates an invaluable learning atmosphere for these children and lets them see that they too can overcome the challenges of living with diabetes.

“I think I had to grow up more quickly because of all the stuff I had to do with my diabetes; all the things I had to avoid,” says Jamie. “But now, when little kids here at the clinic ask me about having diabetes, I try to tell them that it’s okay to have diabetes and that they can do whatever they want if they have the support of the people around them.”

Patients at the clinic are also provided with long term help by having access to a social worker who counsels the child and family and provides support until the child becomes an adult. This service helps families more effectively cope with the new adjustments to their lifestyle.

“One of the things we say to the families a lot is that their child is a kid first and a person with diabetes second,” says Landry. “Education is the key. The more parents are educated about diabetes the more they can help their child and themselves. And along the way, if they need a helping hand or someone to provide support, we’re here.”

And eventually, many parents find that life with a child who has diabetes is no different than life with a child who doesn’t. “The key is to stay focused on your child’s needs and their life ahead and keep everything as normal as possible,” says Moore. “Maybe someday they will find a cure for diabetes, but you have to stay positive now and keep moving forward. I’m probably making it sound easier than it is, but we had to accept it and we had to do it for Jamie’s sake. Together, my wife and I support each other and we both support Jamie and we rely on the clinic and hospital to help support us.”