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SOUTH BRUNSWICK: SBHS teen copes fine with diabetes challenge

By Kim Spinelli, Special Writer
   South Brunswick High School sophomore and Monmouth Junction resident, Tom O’Toole, 16, is a typical teen.
   He texts frequently, has his driver’s permit, listens to music and plays sports. The difference is, Tom has Type 1 Diabetes and is insulin-dependent.
   One would never know it from meeting him. In fact, it’s not something he advertises, but he’s happy to share his experience and explain this complicated disease if you ask.
   ”There are a lot of misconceptions with this disease,” Tom said. “In grammar school, my teacher explained to the class what it was to help ease my classmates’ fears. She emphasized that it was not contagious,” Tom said. “People often ask me, ‘Why do you have it (diabetes)? You’re skinny.’ What they don’t understand is that I didn’t cause it, it’s genetic. Many confuse what I have with Type 2 Diabetes, which is often associated with people who are older and overweight, have high blood pressure and/or cholesterol. Once I explain it, people usually become more personable.”.
   According to the Juvenile Diabetes Research Foundation (JDRF)’s website, jdrf.org, Type 1 Diabetes is defined as “an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food.”
   It defines Type 2 Diabetes as “a metabolic disorder in which a person’s body still produces insulin but is unable to use it effectively.” The causes are not yet entirely understood.
   JDRF focuses on research and quality of life improvement. Currently, there is no cure for either type of the disease. Finding one is the Foundation’s ultimate goal, according to its website.
   Tom and his family take pride in having overcome the disease’s challenges.
   Tom is an active member of the high school’s 15-member golf team, which plays nine-hole home games and practices at the Bunker Hill golf course.
   ”I think we have a strong team this year and good coaches,” Tom said.
   Tom said he usually shoots in the low 40’s. Even more impressive is the fact that he was one of only two freshmen who made the team last year.
   ”Tom is a very dedicated, hard-working golfer who has not let Type 1 Diabetes affect his athletic determination,” said Mark Kraft, SBHS Boys Golf Coach/Director of Bands.
   His dad, Thomas O’Toole, put a golf club in his son’s hand at age three, knowing that it’s a game he could play his whole life. He also very much enjoys the time they spend together on the course. The two are very close and even share the same birthday, Oct. 18.
   ”Even though Tom has this disease, it doesn’t slow him down,” said Mr. O’Toole. “He never complains, and never once asked, ‘Why me?’ The disease has definitely made him more responsible and more mature for his age.”
   Tom said that he wants society to be more accepting and that some parents don’t want to accept the responsibility of having him sleep over a friend’s house.
   ”To me, having diabetes isn’t a hindrance. In fact, it inspires me to be and do my best,” Tom said. “It’s given me strength and taught me not to take life for granted, but to be responsible and grateful. People often think I’m very dependent, when in fact the total opposite is true.”
   In addition to playing golf, Tom is a Boy Scout and former member of student government and the recreational basketball team.
   He takes two types of insulin daily, a 24-hour medication and another that he takes with meals and snacks. Both can be adjusted accordingly. His daily routine to cope with the disease takes about 10 minutes throughout the day, and has gotten easier due a monitoring device he began wearing in January.
   He said he needs to eat regularly and packs one or two peanut butter and jelly sandwiches if he knows he’ll be on the golf course for a few hours. If his blood glucose numbers are lower than they should be, he eats and/or drinks something with sugar or glucose in it, like orange juice.
   ”Tom’s complained maybe three times in his whole lifetime,” His mom, Esther O’Toole said. “We don’t allow his diabetes to ever be an excuse. I tell him, ‘Everyone has something in life to overcome, this is yours. You own it, deal with it.’ It doesn’t stop him from playing golf or basketball, bike riding, hanging out with friends, or doing any of the typical things teenagers enjoy.”
   Tom wears a discrete device called a continuous blood glucose monitor, otherwise known as a CBGM. It is a wireless, water-resistant device that is used to evaluate blood sugar patterns throughout the day and night.
   The system eliminates some of the necessary daily finger pricks and automatically records an average glucose value using a sensor while the person with diabetes continues daily activities.
   Tom said he even wears it while swimming and in the shower. The device has a quarter-sized chip in it like one you’d use for a mini-computer that he charges regularly. He also cleans and replaces its parts himself when necessary. The device also has customizable alerts that notify you of oncoming highs and lows and allow the wearer to make corrections.
   ”He basically doesn’t have any limitations,” his father added. “The CBGM (monitoring device) has made his life so much easier. I’m fairly confident that he’ll do fine when he goes off to college. The device is wonderful and has helped tremendously.”
   A lot of calculations are involved with diabetes, which can be intimidating, but Tommy has his routine down like clockwork,” said Ms. O’Toole.
   Tom was diagnosed with the disease at 19 months and knows no other lifestyle and has his routine down pat. The symptoms his parents saw were pretty typical of the disease, such as excessive thirst and severe weight loss in a short period of time.
   A urinalysis and blood test confirmed the O’Tooles’ suspected diagnosis. Tom’s Aunt Sheila, his dad’s twin sister, had recently been diagnosed with Type 1 Diabetes at age 28.
   ”His blood sugar was in the high 600’s, and normal is about 80-120. (There is a danger of going into shock if your levels fall below 70),” Ms. O’Toole said.
   Tommy was immediately hospitalized and hooked up to an IV machine to give him fluids”.
   ”Fear would be the emotion I would use to describe how I felt at that moment, as would any parent who was just informed that their child had a life-threatening disease,” Ms. O’Toole said.
   The O’Tooles said they tried not to think about the disease’s potential, long-term serious side effects, such as organ damage, amputation or blindness.
   ”After the diagnosis sunk in, it was time to get to work. I said to myself, ‘Okay, now I need to learn about this,” Ms. O’Toole said.
   Mr. O’Toole said, “My wife, Esther, has been tremendous in spearheading Tom’s care. It can be frustrating and scary, because it’s not a perfect science, but the diagnosis is not a death sentence. His condition is manageable.”
   Ms. O’Toole said, “One of the good things about diabetes is that it forces you to live a healthier lifestyle, to eat healthier and to exercise. It makes us much more aware of what we’re putting into our bodies, things we all should be doing.”
   She said that they eat a lot of fruits and vegetables and try to avoid saturated fats. She and her son, who takes a Foods class at the high school, do the cooking.
   ”Cupcakes and ice cream are okay now and then but not part of our normal diet,” she said. “Of course I know that as a teen Tom’s going to cheat once in a while. Moderation is the key.”.
   Tom goes to Children’s Hospital of Philadelphia’s satellite office in Princeton, New Jersey for quarterly monitoring with a team of pediatric endocrinologists and nurse practitioners.
   They do a physical exam and discuss any new and upcoming advances in technology. They also take what’s called an “HbA1c” blood test, which identifies trends and fluctuations in blood sugar levels.
   Ms. O’Toole downloads patterns from the monitoring device Tom wears and brings them for discussion. They are looking for a “7” or below, but basically, they’re looking to see that Tom is maintaining good control of the disease, according to his parents.
   The one thing Tom says that can be frustrating is that when his levels are running low, it disrupts his sleep pattern, so his quality of sleep is sometimes poor.
   In addition to the support of his parents, to relieve stress and relax, Tom talks with his stepbrother, Mr. John-Alex Torres, who also suffers from an autoimmune disease, hepatitis.
   Giving back is important to Tom. The family is involved in various activities with the Juvenile Diabetes Research Foundation where Tom serves as a mentor to kids with diabetes as young as age four, and even spoke on the panel at JFK Medical Center to parents with questions about how to help their children manage the disease.
   SBHS Nurse Ms. Donna Sichta and SBHS Counselor Mr. John Marron saw a great need within the school to support parents of children with this disease, whether they have Type 1 or Type 2.
   Specific numbers were unavailable, but primarily through word of mouth, they said they knew the need was great and the disease pervasive throughout the district.
   In October they founded the “Diabetes Parent Support Group,” which has grown in popularity and is now open to parents of any child in the district, even those as young as preschoolers.
   ”It allows parents a networking opportunity to share invaluable information with one another. They are the greatest resource for each other,” Ms. Sichta said. “Parents learn things like which camps are accommodating, and older children of parents in the club have now begun babysitting for younger children with the disease.”
   The coordinators bring in speakers from local hospitals and the JDRF.
   ”We want to make parents aware of services they may not have a chance to research themselves because their lives are so busy,” Ms. Sichta said. “It gives them an opportunity to vent about their unique problems and troubleshoot solutions.”
   The group meets on the third Thursday of every month from 6:30 p.m. to 8:30 p.m. in the high school’s Annex Conference Room. For more information, email [email protected] or [email protected].