The New Normal: Living with Type 1 Diabetes

It was just a typical weekend day by the pool for eight-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,” said 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.

A Surprising Diagnosis

A quick trip to a nearby drug store and two positive urine ketone test strips suggested that Ethan had too much sugar in this blood. The doctor’s office was closed, so Ethan’s dad Russ took him to the Wolfson Children’s Emergency Center where they found his blood glucose level was 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 Specialty Care, Jacksonville, 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, which meant that because his pancreas wasn’t producing insulin, his body was forced to break down fat for energy instead of glucose. This process creates chemicals called ketones that build up in the blood and urine. High levels of ketones cause the blood to become acidic, which is a life-threatening condition if left untreated.

“Ethan received an IV insulin drip to get his blood sugar down, and later began a combination of insulin and dextrose (glucose) so we could continue to get rid of the ketones while keeping his blood sugars regulated,” said Dr. Torres-Santiago. “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 Russ to show them “survival skills” for Ethan’s newly diagnosed condition including how to check blood sugar with a finger prick, administer insulin shots, 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, he pricked his finger to test his blood, and before each meal had to have an insulin shot. At night, Ethan had another shot of insulin to keep him regulated while sleeping. From the first few days home from the hospital, he 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.

What is Type 1 Diabetes?

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.”

A New Normal

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-carb 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.”

What Parents Need to Know

Dr. Torres-Santiago said 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 are relieved to be told that there is nothing they could have done to prevent it.

Symptoms to watch for:

• Frequent urination – Kidneys work overtime when the body has too much glucose in the blood stream by flushing it out in the urine. This causes the need to use the bathroom more frequently, and in larger amounts.
• Always thirsty – All of those extra trips to the bathroom can cause dehydration but the body’s attempt to avoid that is to require more fluids, which causes excessive thirst.
• Weight loss – Even with a good appetite, children and teens can actually lose weight because the body breaks down muscle and stored fat in an attempt to provide fuel for the cells when glucose isn’t present.
• Fatigue – Because their bodies cannot use glucose for fuel, kids with Type 1 have less energy.
• Bedwetting – The kidneys are working overtime, even at night, which can cause bed nighttime accidents.

Source: KidsHealth.org

 The Northeast Florida Pediatric Diabetes Center at Wolfson Children’s Hospital can be reached by calling 904.202.8547.

Thank you to Wolfson Children’s Hospital for sponsoring this post.