High and low: One family's story of diabetes

Editor's Note: This is the fifth in a series of articles from the Dexter Daily Statesman focusing on special needs of special children.

By Noreen Hyslop

Dexter Daily Statesman

Every day, four times a day, 4-year-old Anna Ellinghouse is stuck with a needle full of insulin that sustains her life. And for the rest of her life, that pattern is expected to continue. Anna has diabetes.

"Your life changes forever with this diagnosis," said Anna's mother, Amy Ellinghouse, who along with her husband, Dave, faced the diagnosis in December 2009, just a few days before their daughter's 4th birthday.

"Anna had not been herself for a week or so," her mother said. "She was thirsty all of the time. Looking back, she was really moody, too, and just not herself."

Amy Ellinghouse studied nursing for two years and currently is employed as Missouri Southern Healthcare's marketing director.

She has worked on presentations about diabetes with Judy Pedigo, a family nurse practitioner and diabetes educator. Pedigo does a presentation involving her son's Type 1 Diabetes diagnosis.

"Anna's signs and symptoms were textbook from this presentation," Ellinghouse said. "I'm sure now that I must have known with the constant thirst and really excessive urination what it all meant, but I think my mind just refused to believe that my 3-year-old could be diabetic."

The Ellinghouses have no family history of Type I diabetes. The couple thought Anna's symptoms must be indicative of something else.

It was Dec. 3, 2009 when Anna's mother realized they were in trouble. As she was driving with Anna in the vehicle, the little girl asked for a sip from a full 32-ounce soft drink cup.

"She had this incredible thirst for several days, and so I handed her the cup," Amy said. "And she drank every bit of it."

Amy had purchased a glucometer several months earlier after she felt her own sugar may be fluctuating. It was still in the box when she pulled it out that afternoon and tested her daughter's sugar levels. The glucometer only read HI, which meant her blood sugar level was higher than 500.

"I recall thinking that the reading couldn't be right. It just couldn't be. I knew her numbers should be around 110, and in my heart, I knew what we had to do. It was an awful feeling, and I was so scared for Anna and for all of us."

They went to local physician assistant, Kim Essner, who told them she was diabetic.

Anna's then-7-year-old brother, Andrew, remained home with relatives while Anna and her frightened parents drove to a St. Louis hospital, where they remained for the next four days.

"There were no other tests to undergo at the hospital. She was diagnosed immediately based on the blood tests," Ellinghouse said. "The doctors were surprised how well she was doing and were very curious as to how we knew to think of diabetes and check her sugar. They're accustomed to diagnosing Type I Diabetes after a child experiences severe illness or goes into a diabetic coma. We knew early enough to spare that from happening to Anna."

The stay at the hospital served a two-fold purpose: to regulate Anna's sugar through medication and teach her parents how to care for a child with diabetes.

"It felt like we were bringing home a new baby," Dave Ellinghouse said. "This was all new and very complicated and intimidating at first."

They've found a routine over the past nine months. They check Anna's blood sugar several times a day, beginning in the morning before she goes to preschool. Anna attends Small Wonders Child Development Center where the staff, her parents said, have accommodated "exceedingly well" and work daily to help monitor Anna's health.

The 4-year-old has become proficient, under her parents' watchful eyes, at sticking her own finger to test her blood sugar levels. And although the five-to-eight finger sticks daily have become second nature to all involved, that wasn't always the case.

"Anna hated the shots so much when we started that it took both of us holding her down to administer the insulin," Ellinghouse said. "She fought and fought and screamed. It was a horrible routine every time; and we all knew that hours later, we'd have to go through it all again."

In early summer, when shots began in the arm rather than the belly, the process became more bearable. Still, the reality that Anna's diabetes will never go away remains at times a difficult fact to face.

"At first Andrew worried himself that he would catch diabetes from his sister," Dave Ellinghouse said. "It took a while to convince him that wouldn't happen."

Still, the family lives with a refrigerator stocked with insulin, long and short-acting, and the carbohydrates consumed by Anna are of constant concern.

"I used to see a friend whose child is diabetic do this, and I once told her there is no way I could ever deal with it," Ellinghouse said. "But when it's your baby, you do what you have to."

The couple counts carbs and administers shots and checks sugar levels in the night. Sometimes those checks reveal a number that necessitates waking up Anna to drink orange juice or eat yogurt to bring her levels up.

Anna knows what her system will tolerate and what she cannot eat or drink. There are no regular sodas and no sugary snacks, limited frosted breakfast bars and iced cakes. Everything is measured.

"Sometimes if I know there's going to be a birthday party at school I can allow her to have some cake, but I have to give her an extra unit of insulin to compensate for the sugar," Ellinghouse said.

Despite all their monitoring and carb-counting and concern, Anna's sugar has jumped as high as 550 and has plummeted as low as 37. They keep an eye on Anna as she sleeps, especially following a particularly active day. Swimming, climbing stairs and playing on a trampoline quickly deplete Anna's energy and have caused a drastic drop in her sugar levels.

The diagnosis comes with a long list of life changes, not only for Anna, but for her family as well. Each day at noon, Amy Ellinghouse spends a portion of her lunch hour at Anna's day care center, calculating how many carbs were consumed at lunch, and then judging by that information, how much insulin to inject before returning to work.

A record low in sugar occurred in May as she was playing with cousins and displaying no outward signs that her count could be low. Her count was found to be 37. Daily records are kept of her highs and lows. Diabetes is a lot of work.

"It's somewhat like having another job," Ellinghouse said. "Your mind doesn't ever shut off from it. We're much lighter sleepers now than we ever were."

Anna's endocrinologist is in St. Louis, and she pays her a visit every three months. That schedule will follow her for a lifetime.

For the Ellinghouse couple, the hardest part of living with diabetes sometimes comes with the certainty of the disease.

"Anna asks sometimes why she has to have diabetes, and the mother in me just fights back the tears. But I can't lie to her and tell her that someday it will go away. It won't ever go away," Ellinghouse said.

Anna's father found a way to explain it to her: "Some people are blind. Some can't walk. We have diabetes and we can live with diabetes. It's something that God just wanted us to deal with and with his help, we do just that."