It was just a typical weekend day by the pool for 8-year-old Ethan Brockman and his family a week before Memorial Day 2014. Ethan, who had just had a birthday the day before, was still celebrating by splashing and swimming with some of his best buddies. As Ethan was playing, his mother Ashley was sitting poolside talking with a nurse friend about some strange things she’d noticed about him lately.
“He was drinking and going to the bathroom a lot more than normal,” says Ashley. “My friend thought he looked tired and that he’d lost some weight, and she mentioned that he might have diabetes.”
Her first instinct was to laugh it off. It’s easy to explain away symptoms in little boys but in hindsight, Ashley says she thinks denial plays a big part in keeping a mother from following her intuition. The thought had crossed her mind briefly over the last few weeks, but she had immediately told herself not to jump to the worst conclusions. A quick trip to a nearby drug store and two urine ketone test strips suggested that Ethan was hyperglycemic (high blood sugar level), and less than an hour later, he was in the Children’s Emergency Center at Wolfson Children’s Hospital with a blood glucose reading of 600, well above the normal 70-130 range. Diagnosed with Type I diabetes, he was admitted immediately to the pediatric intensive care unit (PICU) where he was started on IV-administered insulin to stabilize his blood sugar level. Then Nemours Children's Health pediatric endocrinologist Lournaris Torres-Santiago, MD, was consulted to continue his diabetes care.
“When Ethan was admitted to the PICU, he was in mild diabetic ketoacidosis (DKA) because the beta cells in his pancreas were not producing insulin,” says Dr. Torres-Santiago. “He received an IV insulin drip to get his blood sugar down, and later began a combination of insulin and dextrose so we could continue to get rid of the acid (ketones) while keeping his blood sugars regulated. Blood sugar has to be maintained at a certain level in order to administer insulin, which helps lower the acid. Our protocol is to use this combo until everything normalizes.”
As Ethan’s condition improved, he began to look and feel a lot better. He watched TV, played video games and even took an origami class. Certified diabetes educator Sheryl Trundy, RN, with the Northeast Florida Pediatric Diabetes Center at Wolfson Children’s Hospital worked with Ethan, Ashley and her husband Russ to show them “survival skills” for Ethan’s new condition including how to check blood sugar with a finger prick, how to administer insulin shots and calculate how much insulin to use by counting the carbohydrates in each upcoming meal, and how to use rescue medication. After two days, Ethan went home from the hospital with a new routine. At least four times every day, Ethan has to have his finger pricked to test his blood, and before each meal, he has to have an insulin shot so his body can use his carbohydrate intake properly. At night, Ethan gets another shot of insulin to keep him regulated while he sleeps. From the first few days home from the hospital, Ethan took charge of testing his own blood, and even giving himself his own shots.
“It is a life changing diagnosis and both parents and children go through a grieving process but it’s manageable, and the best control is achieved by attention to detail,” says Dr. Torres-Santiago. “It’s not a death sentence.”
Dr. Torres-Santiago added that most parents are in shock when their child receives a diagnosis of Type 1 diabetes because unless there is a close relative with the disease, it’s not even on the radar. There’s really no obvious indication until symptoms get severe enough to cause such signs as nausea, vomiting, weight loss, increased thirst and urination, bedwetting, loss of energy, even coma – most of which can be easily explained away with other more common causes like summer heat, growth spurts and stomach bugs. Most parents, she says, are relieved to be told that there is nothing they could have done to prevent it.
Insulin is a hormone made by beta cells in the pancreas, and is used to help move blood sugar into the body’s cells to be stored and used later for energy. When the pancreas is not producing insulin, the sugar cannot go into the cells so it builds up in the blood instead. Doctors believe that this occurs when the immune system mistakenly attacks and destroys the beta cells in the pancreas. Therefore, Type 1 diabetes is considered an autoimmune disease much like Lupus or Celiac disease, and researchers are still working to figure out why people develop it and why it is becoming more common. Between 2001 and 2009 the number of Type 1 cases has gone up 23 percent. Dr. Torres-Santiago says that although it can be diagnosed in infants and in young adults, most diagnoses are made between the ages of 5-17. Currently, the group is diagnosing about two children per week.
“It is becoming more common and we don’t know why,” says Dr. Torres-Santiago. “My advice to parents is to know what’s normal for your child, trust your gut and get any symptoms checked.”
The Brockmans are doing their best to keep life as normal as possible. Already healthy eaters and athletic as a family before Ethan’s diagnosis, they’ve made some changes at snack time like substituting Goldfish crackers and other high carbohydrate snacks with lower carb options such as peanuts, and they’re making sure he gets to his karate classes and out to play with his friends. Ethan will go in for a visit every three months until he turns 18 so the doctors and educators can monitor his progress. Since his diagnosis, Ethan has graduated from insulin shots to a pump, and even has an app on his phone that alerts him and his parents if his blood sugar is too low or high. The Brockmans say the education and care they received from the moment he entered Wolfson Children's Hospital has helped them navigate through a scary diagnosis and treatment. And with Ethan and his positive attitude leading the way, she says, the family is doing just fine.
“Russ and I are both incredibly proud of how mature Ethan has been with this and how he’s handling it. He’s done an amazing job of jumping in and taking control,” she says. “He has his moments when he’s angry that he has this disease but he is mostly positive. This is life – it’s just our new normal.”