Mom helps daughter live with juvenile diabetes By Monica Ginsburg • Photos by Frank Pinc
Jordyn Washer was always hungry, but losing weight. She was complaining that she was tired and acting sluggish. She was chugging water, but still thirsty. That was when mom Judi called the pediatrician.
"These are all warning signs, but it was her constant, extreme thirst that got me," says Washer, a receptionist for the Jewish Council for Youth Services in Chicago. "She was sleeping with a water bottle at her bedside every night because she would wake up so thirsty. I didn't think she had diabetes, but I called my doctor and brought Jordyn in later that day for a glucose test. I thought this was just a formality."
It wasn't. The doctor gave them the bad news: Jordyn had Type 1 juvenile diabetes. There is no cure for it, but it can be controlled by insulin and diet. And, he said, researchers are working on a cure.
Jordyn was only 5 at the time.
"I was so blown away," says Washer, wiping a tear from her eye. She continues: "I didn't yet understand the impact of everything. They sent us straight to Children's Memorial Hospital. They hooked Jordyn up to an IV to stabilize her blood sugar. I asked them what time we'd be going home and they said in about five days. Within 24 hours I was giving Jordyn an insulin shot. As a parent you never thinks it's possible. Weren't there more tests to take? Wasn't there a way to move slowly into the shots?"
In a state of disbelief, the family began reorganizing its life, from grocery shopping to mealtimes to play dates, around Jordyn's medical needs. Washer and her husband, Michael, a pastry chef for Wolfgang Puck Catering and Special Events, struggle with the added challenges of balancing work, marriage and the needs of their younger daughter, Sydney.
It's a disease that affects the entire family, says Karen Peterson, one of the pediatric nurse practitioners who runs the diabetes clinic at Children's Memorial Hospital. "There are tools and tests available to help families monitor blood sugar better, yet it's still hard. It's hanging over their heads all the time. The parents and children who do the best think of it as something they have to adapt to, and make it just a piece of who they are, not their whole life."
Washer agrees, but it's tough, she says. "We try very hard to make Jordyn feel like she is no different from any other kid, but we are all still adjusting to how much our family life has changed. It is a constant balance of a normal life when things are very far from normal."
Tools for survival When she was diagnosed in January 2002, Jordyn joined nearly 1 million Americans living with Type 1 or juvenile diabetes, a chronic disease that can occur at any age but is most commonly diagnosed in childhood. Each year, approximately 30,000 Americans are diagnosed with juvenile diabetes, including more than 13,000 children.
In this type of diabetes, the pancreas stops producing insulin, a hormone that enables you to get energy from food. Without insulin, the sugar in the blood can't be used. It builds up in the bloodstream even while the body is starved for energy. People with Type 1 diabetes must inject insulin several times every day to survive.
"There were a lot of conversations about the disease not having a cure and that she will never grow out of it. That was devastating," Washer says. "One of the things that kept me going was that I knew my child was coming home and there were many children in the hospital that were not going home any time soon. My daughter can still swim, play soccer and go to school. Too many children there couldn't, and their parents would happily take what we were given."
Day-to-day challenges Controlling diabetes means keeping the sugar, or glucose, levels in the blood as close to normal as possible. In general, food raises the glucose level; exercise and insulin decrease it. Carbohydrates, including bread, pasta, cereal, milk, fruit and fruit juices, have more effect on blood sugar than protein or fat, and need to be spaced throughout the day.
To maintain the balance, Jordyn takes two or three insulin injections daily. She tests her blood sugar six or more times a day by pricking her finger, putting a drop of blood on a chemically sensitive strip and obtaining a reading on a meter. She eats meals and snacks at scheduled times, adjusting the amount of carbs or insulin in response to her blood sugar level. Jordyn does her own finger pricks and has asked that only her mother or father give her shots.
"The finger pricks usually don't hurt, but sometimes the shots are scary," says Jordyn, now 7. "But I'm brave; I have diabetes."
If the balance is thrown off, the Washers must be prepared for hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions, which can be life-threatening.
"Until she is self-sufficient, Michael and I have to be an arm's length away, just in case," Washer says. "We have to eat at certain times of the day, this is not optional. It has done a number on our social calendar, as her nighttime insulin has to be done between 7 and 9 p.m. If we do go out, we need to find a babysitter we really trust because a life-or-death situation might really come up.
"This is her world. I can't force her to have someone else give her shots. I have to help her live in her world and teach her that when she grows up she has to take care of herself."
"When I'm high, I get really cranky and frustrated for no reason," says Jordyn. "I try to run around to bring my numbers down or when I was playing soccer, my mom asked my coach to put me in the game. When I'm low, I feel tired and I need to have a juice box to bring my numbers back up."
Life in the Washer household revolves around Jordyn and her blood sugar levels, which can fluctuate if she eats too much or too little at snacks or meals, if she's outgrown her insulin dosage, by the variability of her physical activities and by stress or other factors.
When the numbers jump around, so does Jordyn. "She has mood swings like you can't imagine, and inappropriate behavior for her age when she's too high or too low, and we all have to deal with the added stress of that,' Washer says. "If her numbers are off, as her mother, that's my success or failure. If she has bad numbers, it's my fault. It can't be her fault; she's 7 years old.
"Helping her cope with the disease has sucked all the energy out of me. This is not like allergies where it runs for a season; this is 24/7 with no chance of remission. But I'm trying to take one day at a time and cherish our family and all the good things we have."
Challenges at school School presents another set of challenges for the second-grader who attends a public school on Chicago's North Side. Over the summer, Washer sends Jordyn's new teacher a packet of information about diabetes. Jordyn stores her test kit, spare juice boxes and an emergency insulin pen in a pencil box in the classroom.
School hot lunches are usually off-limits, since most contain too many carbohydrates. If Jordyn doesn't eat enough lunch, she can have an insulin reaction. If she trades food with other kids, she may eat too many carbs. Jordyn occasionally misses school for doctor appointments that have to be scheduled during the school day. And colds and other illnesses typically linger longer than usual, causing her to miss more school.
"The teachers and staff at our school have been instrumental in helping us deal with her day-to-day care. Jordyn's teacher calls me from her cell phone if something's up with her numbers. She puts lemon in Jordyn's water so it tastes better and encourages her to drink more, which helps if she has high blood sugar."
One day, Jordyn's blood sugar was low just before lunch. But she couldn't go downstairs to the cafeteria in that state for fear she would get dizzy and fall. So, Washer says, the teacher asked one of Jordyn's friends to stay and eat lunch with Jordyn in the classroom so she wouldn't have to eat alone.
"It is the little things the teachers have done that make me so appreciative," says Washer. "Our school has struck a wonderful balance of empathy and concern without singling her out."
"It doesn't feel like I'm different," says Jordyn. "My grandma and grandpa have Type 2 diabetes and they take pills. And there's some older kids at school who have diabetes and they do their own shots. So I'm not the only one."
Everyone has something Washer says having a sibling with a life-threatening illness has been hard on Sydney, now 5. The kindergartner sometimes acts out in response to the extra attention that is paid to Jordyn. "To some degree we probably have not addressed that with Sydney as well as it needs to be, but Jordyn's illness is just a fact in our house; it's just the way it is."
And Sydney has her own medical issues. Her acid reflux requires that she take medication once a day. "I tell my kids it's how Jordyn was made, it's how Sydney was made, everyone's different. We tell our kids that everyone has something. Sometimes you will see what that something is, sometimes not. I think they both are more accepting of people with special needs because they know everyone has something. But Jordyn's illness has been hard on Sydney, too."
Jordyn seems to understand her mom's concern for her sister. "It kind of feels like I get more attention if I'm feeling low or high because then I have to do my finger prick. Sometimes in the morning Sydney has to wait while I get my shot," she says.
Despite the constant challenges, Washer acknowledges that her family's situation is better than many faced with the illness. "We have good insurance coverage and a great support system. Every parent with a Type 1 child is exceptional. It's a rotten club that none of us want to be in."
Just the facts Here are some facts about juvenile diabetes from the Juvenile Diabetes Research Foundation International.
• Juvenile diabetes is not caused by obesity or eating excessive sugar, two common myths.
• Ninety percent of children who develop Type 1 diabetes have no relative with the disease.
• Although the causes for Type 1 diabetes are not entirely known, scientists believe the body's own immune system attacks and destroys insulin-producing cells in the pancreas. Both genetics and environmental "triggers" are being studied as potential causes.
• Warning signs of juvenile diabetes include extreme thirst, frequent urination, drowsiness or lethargy, increased appetite, sudden weight loss for no reason, sudden vision changes, sugar in urine, fruity odor on the breath, heavy or labored breathing, stupor or unconsciousness. These may occur suddenly.
• Type 2 or adult-onset diabetes typically develops after age 40 but can appear earlier. It has recently begun to appear with more frequency in children. In this form of diabetes, the pancreas still produces insulin but the body does not produce enough or is not able to use it effectively. Treatment includes diet control, exercise, self-monitoring of blood glucose and, in some cases, oral drugs or insulin.
• Taking insulin does not cure any type of diabetes or prevent the possibility of devastating effects such as kidney failure, blindness, nerve damage, amputation, heart attack and stroke.
• For more information, log onto the American Diabetes Association at www.diabetes.org or the Juvenile Diabetes Research Foundation International at www.jdrf.org.
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