The traumas of Type 1 diabetes

The phone call that changed everything came on an ordinary Tuesday night in April 2009. Our youngest daughter Nancy's voice was strained.

She was calling to report that Danny, our then-6-year-old, irrepressible, redheaded fireplug of a grandson, had been hospitalized with all the symptoms of Type 1 diabetes.

This had to be a mistake. We'd seen Danny just two days before. True, he seemed less rambunctious than usual, but he was still struggling with a nasty cold or virus and looked peaked. I'd also noted that he seemed far thinner, but then this was a growing boy, and little boys sometimes sprout up in spurts.

Nancy set me straight. The diagnosis was certain. Our grandson would remain in the hospital in North Jersey for the next several days, until his blood-glucose level had stabilized and his parents had mastered what it would take to keep him alive: the delivery of insulin.

Nancy's easy parenting days were over.

And in Moorestown, my husband Vic and I were starting a grieving process, although we didn't know it.

Type 1 diabetes, formerly called juvenile diabetes, used to be a vague abstraction. My husband and I knew it had to do with kids and blood sugar. But we'd been blessed: Nobody in our family had the disease, and our information gap was wide and deep.How that has changed.

A diagnosis of Type 1 is very different from a diagnosis of Type 2, the more common form that is often at center stage in the media. It is increasing alarmingly; the newest findings project that by 2050, one in three Americans will have Type 2 diabetes.

Type 2 is often tied to lifestyle: being overweight, under-exercising, and maintaining poor eating habits. If untended, it can lead to heart disease, stroke, amputations, blindness, and death.

But a motivated patient can usually do something about Type 2. Its course can be changed with vigilance, exercise, and/or drugs, such as insulin.

Type 1 is a very different disease.

The basics:

Type 1 is an autoimmune disease; the body's immune system attacks and destroys the insulin-producing cells of the pancreas, so lifesaving dependence on injected or pumped insulin is permanent

Type 1 most often strikes children and adolescents, but it can occur in adults too.

The onset of the disease is often dramatic, with symptoms of extreme thirst, frequent urination, sudden weight loss, lethargy, and fatigue.

People with Type 1 diabetes must be constantly vigilant in avoiding lows and highs in their blood-sugar levels, both of which can be quite dangerous.

Danny had joined the roughly 15,000 individuals diagnosed with the disease every year in the United States.

There has been a steady rise in the incidence of Type 1 diabetes, says Giuseppina Imperatore of the Centers for Disease Control and Prevention in Atlanta. A European study showed a rise of 3.9 percent per year between 1989 and 2003, and recent U.S. research suggested a similar trend here, says Imperatore. Some factors in the environment seem to be causing the uptick, but experts don't know what they are.

Terri H. Lipman, a University of Pennsylvania nursing professor and a nurse practitioner at Children's Hospital of Philadelphia, has maintained a registry of all children up to age 15 with Type 1 diabetes in Philadelphia since 1985. Sixteen other U.S. registries have come and gone because of a lack of funding, making Lipman's the only one covering the last 25 years.

Philadelphia's Type 1 numbers are rising, Lipman says. "From 1985 to 1995, incidence rates were reasonably stable. But in the next 10 years, from 1995 to 2005, there was an approximately 50 percent increase in incidence."

Lipman's work encompasses treatment and support given by the hospital's Diabetes Center for Children, which follows and treats 2,000 children from birth to 21 years old. A team of experts helps patients and relatives cope because, as Lipman emphasizes, diabetes has a profound impact on families.

It surely has had one on ours.

Our daughter, Nancy Friedman, and son-in-law, Michael Zinn, will never forget April 7, 2009. Danny, the youngest of their three sons, had been up through the predawn hours, urinating constantly and thirsty in a way he'd never been before.

Sometime during that long night, Nancy recalls "freaking out" and telling her husband she thought Danny might have diabetes. "He's probably fine - we'll check it out tomorrow," said Mike, a glass-half-full kind of guy.

They did, and Danny's pediatrician didn't mince words after a blood test. He immediately sent the family to St. Barnabas Medical Center because it looked as if Nancy had been a good diagnostician after all.

Nancy and Mike have only blurry memories of the next few weeks. We struggled along with them. My husband and I felt the way we had after a bad case of the flu - a bit dazed, wobbly, and drained. Neither of us could sleep.

As a friend with a severely autistic grandchild later explained, we were grieving three times: once for Danny, once for our anguished daughter and her husband, and once for ourselves.

This little boy who hated needles had to adjust to thousands of pokes and prods and shots a year. His parents had to master a complex method of carbohydrate measuring and counting, worrying constantly about everything Danny ate. "I actually cried once when I forgot to count the carbs in several leaves of lettuce," Nancy recalls. "The thought of my hurting Danny was devastating."

The school nurse became a staunch ally, although her own learning curve was steep. She had never had a child with Type 1 diabetes.

And a once casual household inevitably became part clinic, with designated spaces for insulin, syringes, glucose tablets, and other assorted paraphernalia of the disease.

Dealing with insurance also has been daunting. Danny's care is costly; insulin alone, after insurance reimbursement, is $50 a vial. For now, a vial lasts a month, but as Danny grows, his need for insulin will, too. Supplies for Danny's insulin pump come to $2,000 a year even after insurance reimbursement.

Visits to the Naomi Berrie Diabetes Center at Columbia University Medical Center in New York City, where Danny is being monitored, are complicated by insurance restrictions: the family cannot see his endocrinologist and nutritionist on the same day and be covered, although they are in the same clinic, requiring the expense of separate trips.

Danny's insulin pump is attached by tubing to an infusion site, and the computer that controls it is worn in a little pouch around his waist.

Changing the site every few days is not pleasant, but it has become grudgingly routine, like so much else.

Yet Nancy and Mike feel lucky that there is some insurance help, and that they are both in secure careers.

The emotional toll of Type 1 can be daunting. Despite his own cheerful nature, Danny has occasional meltdowns punctuated by anger and denial. "I wish I could get just one day without diabetes," he has said. It is a present his parents wish they could give him.

For us, there are no more indulgent overnight grandparent visits without Danny's parents, no carefree trips to the circus or the zoo without a parent present. Time with Danny requires planning and training, equipment and emergency supplies.

We all know that unless a cure is found, Danny will have to depend on insulin delivery for life. That alone creates a certain anxiety.

Just more than a year and a half has gone by since that call from Nancy. Sometimes his grandfather and I still get lost in the murky waters of change and, yes, anger. The emotions don't go to college.

Why Danny? Why this lousy disease foisted on one small boy who wanted to be the first human to learn to fly?

Over time, we've worked on balancing love - and overprotection - if not perfectly, then at least reasonably well.

Because Danny is just one of our seven grandchildren, we've also tried to master the fine art of distributing attention. For a while, Danny had become our intense emotional focus. Not good for him, for the others, or for us.

I've now found myself a "veteran," talking to grandparents of newly diagnosed children, telling them it will get easier. And it does.

There is hope for a cure. Stem-cell research may be the route. An artificial pancreas may be a major advance.

For now, Danny is astonishing us. He's still as playful as a puppy, has friends who love and accept him, and two older brothers who are learning to be part of a family system as it goes though tough and triumphant times.

Last month, our entire clan converged on Franklin Lakes, N.J., for the local chapter of the Juvenile Diabetes Research Foundation's "Walk for the Cure." It was our second time around.

Last year, the torrential rain wouldn't let up.

This year, the sun was aglow, and the day was one of those shining examples of Mother Nature at her most benevolent. I took it as an omen as I walked along with my grandson, holding his hand.

As we walked, I wondered what Daniel Levi Friedman Zinn would remember of this day years from now.

As we reached the finish line, we hoisted him up in the air, chanting "Dan-ny! Dan-ny!"

I don't think he saw my tears.

Source: Philly.com Health News , By Sally Friedman "For The Inquirer"