“She was a pleasant baby, too. Not a good sleeper, though,’’ said Cavin of Rileigh, now almost 3 years old.
Though Rileigh had never been a good sleeper, Amy and her husband, Rob, became nervous when on July 2, 2006, Rileigh, at 13 months, woke up every half hour throughout the night.
‘‘I kept looking at her teeth to see if she was teething,” said Amy, choking up. “The next morning she drank five 10-ounce sippy cups of water in half an hour. As the day went on she became lethargic, almost limp.’’
The Cavins were horrified and called Rileigh’s pediatrician right away.
At the pediatrician’s office, they were told that Rileigh had lost 4 pounds since her well-child visit just two months earlier.
“They sent us to Tod’s Children’s Hospital — when it used to be in Youngstown — for bloodwork,” said Amy. “Her sugar was at 633. The average should be between 80 and 100.”
Rileigh was immediately admitted, where doctors began a continuous IV drip of insulin to stabilize her blood sugar.
‘‘Overwhelming would probably sum it up,” said Amy of the full week the family spent with Rileigh at Tod Children’s Hospital following her Type 1 diabetes diagnosis. “We had daily classes to learn how to do the finger prick and were taught how to give her her shots and count carbohydrates. They taught us explicitly how to read labels so that we could monitor her sugar.”
All of this was made much more difficult with Rileigh’s age.
‘‘What was really traumatizing for her was that when we first got to the hospital, before taking her upstairs, they had to put an IV in her,” said Amy. “It took like 30 pokes to get it in. For the rest of the time we were there, when someone with a white coat would come in the room, she would freak out.’’
Although Rileigh’s age complicated the situation somewhat, in other ways, it was a blessing for the Cavins.
‘‘She adjusted very quickly once we got into her home environment. She settled down and she doesn’t even blink at the finger prick anymore,” said Amy. “It kind of helped that she was so young, too. She’s kind of known this all of her young life.’’
At first, monitoring Rileigh’s condition care was both overwhelming and upsetting. Rileigh needed insulin shots 5 to 8 times a day. Anytime she consumed carbohydrates, she would need a shot. In addition, she would have her finger pricked for blood sugar testing between eight and 12 times each day.
‘‘It was very hard to know that we were hurting her, but we knew we had to do it,” said Amy, “to keep her here with us. I used to think ‘I could never give myself a shot or give someone else a shot,’ but when you are faced with it, it’s your own child, you have to do it.’’
Nine months later, though, Rileigh began to run from Rob or Amy when she saw them preparing a shot.
They had been given information by their endocrinologist, Dr. Cydney Fenton at Akron Children’s Hospital, about a new pump device that offered better management.
“We’re seeing Type 1 diabetes diagnosed at a higher rate than ever,” said Fenton. “Especially in little ones, like Rileigh.”
The problem is, insulin injection treatment is tailored to older people and isn’t as effective in children.
The pancreas, in a healthy person, releases a little bit of insulin at a time all day long. Each time a healthy person consumes carbohydrates, the pancreas releases enough to move sugar, released by the liver, to each organ. In a diabetic person, the insulin is not released, and the sugar stays in the blood. Insulin injection shots, therefore, take care of sugar in the blood from food consumed.
“In children, it is difficult to get an effective treatment from the conventional insulin injections because the amount of insulin needed is so small,” said Fenton.
For that reason, Fenton suggested pump therapy to the Cavins. The pump, which is about the size of a pager and has a child-lock feature to keep buttons from being pushed by accident, holds a three-day supply of insulin. Every 10 minutes, it releases a tiny dose into the bloodstream through a six-millimeter catheter. This catheter, which only takes seconds to insert directly under the skin, is changed every three days and rotated around the body to prevent infection. Because it is so tiny and inserted on top of fatty tissue — like on the thigh, stomach or upper buttock, the catheter is actually less painful than the finger prick blood test, according to Fenton, who has worn it herself.
“It’s actually not scary at all,” said Fenton. “It doesn’t hurt at all, and the device on the skin is only about the size of a quarter. Absolutely the most terrifying thing for everyone who hears about it is that it is a surgical thing or something to put it on, but it’s not. So we’re big pumpers here.”
Akron Children’s Hospital diagnoses one child with diabetes every other day and currently has about 400 out of 800 patients, as young as 15 months old, using the pump.
In addition to the continuous drip, each time Rileigh eats, Amy or Rob enter the amount of carbs she will consume into the pump, and the pump calculates exactly how much insulin to release into Rileigh’s bloodstream.
If Rileigh should accidentally pull out the catheter while rough-housing, the pain will be equivalent to a Band-Aid being pulled off, and the catheter can be put right back in. The pump itself is made out of “the same stuff as a motorcycle helmet” so it is difficult to break it. Also, because Rileigh loves sports and is enrolled in a dance class for the fall, she can take the pump off for up to an hour.
Rileigh’s condition is very stable now, and she only really has trouble when she is going through a rough period. In fact, Fenton expects that, due to her highly motivated family and excellent medical care, Rileigh will live a long, healthy life, free of complications. But her parents will have to be sure to instill healthy living values so that she will take care of herself as she gets older.
‘‘Everything can offset her blood sugar,” said Amy. “Stress — like if she throws a temper tantrum — it will drop. If she’s playing outside, it will drop. When she has growth spurts, it will drop. When she is sick with a cough or a runny nose, it’s usually a little higher.’’
On an average day, though, with the pump, they only have to check her sugar levels four to six times, a far cry from the eight to 12 times a day they checked Rileigh’s blood when she used insulin injections. In addition, Rileigh’s pump is a continuous glucose monitor, testing her blood automatically every five minutes.
“I hope that we are giving her a good example of how to manage her diabetes,” said Amy. “It can be very serious — eye failure, limb amputation — but we’ve been trying to teach her about eating and managing her sugar.’’
Another concern for the Cavin’s was finding the right preschool for Rileigh. Luckily, their son, Zachary, 6, who holds Rileigh’s hand while she gets her catheter changed, was entering preschool at Tod Avenue Howland United Methodist Christian Preschool.
“They are aware of her situation and said they were more than willing to step up,” said Amy, who will go in this summer to teach the staff the same techniques she learned in the four-hour training she and her husband attended to learn how to use the pump. But the pump and her treatment aren’t her greatest concerns.
‘‘She’s starting preschool in the fall,” Amy explained. “So, more directly, I worry about her being treated differently. A friend of ours has a daughter in about second or third grade who also wears a pump. Some of the kids weren’t as nice to her. Kids can be cruel. I hope it doesn’t affect her negatively. ’’
In the meantime, Rileigh treats her pump as if it were an accessory, showing it off and sharing it with her toys.
‘‘Actually, she has an elastic band that holds the pump on,” said Amy. “She has a few of them. She was playing with her Build-A-Bear, she calls her Sarah, and she put the plastic band around its waist with her pump pack, and, you know, Sarah had diabetes, too.’’
Photos by Steve Schenck / Tribune Chronicle
Rileigh Cavin, 3, of Warren, smiles for the camera.
The Cavins have a 23 member team, Rileigh’s Angels, who walk in the American Diabetes Association’s Walk-A-Thon each October and hold fundraising events throughout the year.
Most recently, the Howland National Honor Society held a bake sale before Rileigh’s Angels’ spaghetti benefit dinner April 19. Between the two, more than $1,600 was raised for the ADA.
To help out, mark your calendar for this upcoming event:
n What: Car wash
n Where: Howland Burger King on East Market Street
n When: 11 a.m. to 2 p.m. Aug. 2
n Hosted by: The Howland girls’ volleyball team in support of Rileigh’s Angels.
DIABETES IN OUR AREA
n 1 out of 10 individuals in our area will develop diabetes
n Nearly 21 million people in the United States have diabetes
n The National Centers for Disease Control reports that the national incidence of diabetes has increased 33 percent in the last eight years
Source: Central Ohio Diabetes Association, www.diabetesohio.org