Renea Zosel, second from right, is on the South Sound board of directors for the Juvenile Diabetes Research Foundation. She's pictured here with her children (from left) Zaraiah, 2, Elizabeth, 10, and Jonathan, 6.
Elizabeth Zosel eyes the bowl of sweet oranges on the dining room table and the plate of homemade cookies next to them. She decides she wants both of them.
Going to the cupboard, she grabs a bolus – an injectable vial of insulin meant to compensate for an expected rise in blood sugar. She hands it to her mother, bares her upper arm and, still talking about something else, takes the shot and goes for the orange. She couldn’t have been more casual.
She and her mom, Renea Zosel, are old hands at managing Elizabeth’s Type 1 diabetes. Elizabeth, now 10, contracted the disease just before her 2nd birthday.
“She was drinking excessively; we couldn’t seem to fill her up,” her mother remembers. “She was peeing all the time and soaking through her pull-ups.” She was also losing weight, crying more than usual and having tantrums. “My mother said, ‘It sounds like your cousin’s symptoms,’ and so I had her tested and she was diagnosed.”
In fact, three of Elizabeth’s first and second cousins have Type 1 diabetes, diagnosed at the ages of 3, 7 and 19. Also called juvenile diabetes, Type 1 usually begins in childhood and young adulthood. It is an auto-immune disease in which antibodies in the bloodstream attack and kill the beta cells in the pancreas, which make insulin. Insulin is a hormone that breaks down sugars, starches and other food so that they can be used for energy. In Zosel’s words, it’s “the little key that opens up every door to give out energy.”
Without insulin to break it down, sugar builds up in the blood and causes the following symptoms, as summarized by the Juvenile Diabetes Research Foundation (JDRF) Northwest:
• Frequent urination; • Dehydration with a dry mouth and excessive thirst; • Sudden blurred or fuzzy vision; • Sugar in the urine; • Fruity, sweet or wine-like odor on the breath; • Increased appetite, including hunger after a large meal; • Sudden weight loss.
The American Diabetes Association (ADA) adds irritability and increased fatigue to the list.
The symptoms can begin suddenly and can be mistaken for more common illnesses, such as the flu.
Elizabeth’s case was unusual in that she had so many cousins with the disease, which alerted her parents and grandparents to the symptoms. “Ninety percent of those with Type 1 have no other family members with the disease,” summarizes Carla Greenbaum, MD, director of the diabetes program at the Benaroya Research Institute at Virginia Mason in Seattle.
This was the case for my daughter’s childhood friend, Andrea. Whenever she was at our house, she asked for milk, milk and more milk. With no diabetes in my family, I didn’t think anything of it. With no diabetes in their family, her parents had no idea what her excessive thirst and hunger meant. She ended up in the hospital with symptoms of diabetic ketoacidosis, which is a near complete deficiency of insulin and elevated levels of certain stress hormones. Symptoms of this life-threatening condition are: • Drowsiness and lethargy; • Heavy, labored breathing; and • Stupor, unconsciousness.
Using a blood test, Andrea was quickly diagnosed with Type 1 diabetes and began a lifelong use of insulin. Like Elizabeth Zosel, she leads a full, active life with plenty of time for her favorite sports and activities.
Facts and Myths about Type 1 Diabetes
About 350 babies, children and young adults are diagnosed with Type 1 diabetes each year in Washington, according to the JDRF. About 30,000 children and adults in the state live with it. It affects about .3 percent of the general population, but 5 percent of those with relatives with Type 1. It is the second most common autoimmune disease in childhood, after asthma.
The incidence is higher among Caucasians, particularly Scandinavians, than it is among other ethnic groups, and – like multiple sclerosis and other autoimmune diseases – it is more common in the Pacific Northwest than in other areas of the country. No one knows why.
The rate is going up a bit, but, again, no one knows why, according to Dr. Molly Carlson, an endocrinologist at the Polyclinic in downtown Seattle.
The cause of Type 1 diabetes appears to be a combination of genetic and environmental factors. You cannot catch the disease from someone else. Obesity does not contribute to its onset. Neither does too much sugar or starches in the diet. Doctors can’t tell who will come down with the disease and who won’t.
“Parents need to know that it is nothing they did that caused Type 1 diabetes,” Carlson says. “In people with genetic markers, there has to be some sort of trigger – a virus, a toxin, a disease? We don’t know.” At present there is no way to prevent the onset of the disease.
“All we can tell parents and patients is to avoid known toxins and eat a healthy diet,” Carson adds.
Managing Type 1 Diabetes
People with Type 1 diabetes must receive insulin directly into the bloodstream every day of their lives.
“The mode of administration has improved,” Carlson says. “Instead of dials and syringes, we have pre-loaded disposable (insulin) pens. They don’t have to be refrigerated and so they’re easier to take to school or on trips.”
Many patients use continuous insulin pumps to provide a more consistent dose of insulin throughout the day and night. A catheter goes under the skin and is connected to a reservoir of insulin about the size of a pager, which attaches to a belt loop or can be carried in a fanny pack. “It’s very much an individual preference,” Carlson says. “Some patients don’t like wearing anything.”
Patients must monitor their blood glucose levels to make sure they are in the target range and to make any necessary adjustments in the amount of insulin. If blood glucose is not kept within an ideal target range, it can lead to complications later in life, including vision problems, kidney failure, stroke or nerve damage. Blood glucose levels have traditionally been monitored with a “finger prick,” in which a drop of blood is taken from the finger and analyzed on a glucose meter. The number of times blood glucose must be tested varies for each patient. “Optimally, you need to do a finger stick before and after each meal and before sleep – seven times a day,” Carlson says. In the last couple of years, continuous glucose monitors have come on the market. They reveal short-term trends in the blood sugar as they happen. You still have to check blood sugar with a finger prick to make sure the machine is calibrated correctly, but not nearly as often, Carlson says. A new, and very expensive, device combines a continuous monitoring devise with a continuous insulin pump. “The continuous monitors can have pre-set alarms that go off if blood sugar is too high or too low,” Carlson explains. She believes most patients would choose continuous glucose monitors if they were not so expensive and if they were covered by insurance. The machines cost about $500 and the sensors, which last three to seven days, cost $35-$70. However, most patients do not need to use the continuous monitors all the time. They are most useful for establishing a baseline, when traveling or when changing lifestyle or foods. Patients with Type 1 diabetes usually see their doctors about every three months, but they should come in any time they have a lifestyle change, including beginning a new sport, moving, being sick or enduring stress. All of these changes affect the amount of insulin the body needs. Despite the need for monitoring blood sugar and taking insulin, “nothing in a patient’s life needs to change,” Carlson says. “They can still eat the foods they like to eat and do the sports they like to do.” She believes in “changing the therapy (the amount of insulin) rather than changing the person’s lifestyle.”
Carlson recommends that newly diagnosed patients see a nutritionist. “You can eat the things you like to eat within reason,” she says. It is a myth that people with Type 1 diabetes cannot eat any sweets or chocolate, but – as with the population in general – they should eat them in moderation. Contrary to some myths, people with Type 1 diabetes should not eliminate carbohydrates.
“It is important not to skip meals,” she continues. “You should eat a balanced diet, and eat from all the food groups – fats, carbohydrates and proteins – with each meal.”
The Zosel family has that process down. “We practice moderation,” Renea Zosel says. “I let the kids eat what they want and take care of it with extra insulin. The stress of trying to be too strict about foods outweighs the benefits. It may cause rebellion down the road.”
Zosel and her husband, Andrew, regularly meet with other parents through the JDRF and Children’s Hospital and Regional Medical Center, and they recommend that parents and children get involved with a support group.
Kathy Bolopue, the current leader of SKWIDDS (Super Kids with Insulin Dependent Diabetes), agrees. “Newly diagnosed families who are able to get involved with the diabetes community seem to do really well with coping,” she says. “Fundraising for the cure or attending a fun or educational diabetes event surrounds you with others that are struggling with the same things that you are. The comfort in that is huge!”
Wenda Reed is a Seattle journalist.
If you are a parent of a child with Type 1 diabetes and would like to share your experiences with other parents on our Web site, please send your comments to wreed@seattleschild.com or call 425-488-0206.
