John Webb, Special to The Clarion-Ledger 6:17 p.m. CT Feb. 11, 2017
Nikki Nichols of Richland, left, is quite familiar with diabetes. Her daughter, Bella, was diagnosed four years ago at age 5.(Photo: Special to The Clarion-Ledger)
Madison Avenue could have us believing that once people with diabetes lower that all-important A1c number an indicator of how well blood sugar has been controlled over the past few months theyll be skipping, dancing and otherwise frolicking through life with a song or balloon for every passerby.
But experts in both the physical and psychological care of people with diabetes is more than a number, and its management far more complex than the regulation of glucose through insulin, diet and exercise.
Sometimes we focus too much on the numbers and the A1c and lose sight of the humanity, said Dr. Elaine Apperson, a pediatric endocrinologist from the University of South Carolina School of Medicine who will be addressing these issues at the Diabetes Foundation of Mississippis 2017 Super Conference on Feb. 18 at the Marriott Hotel downtown.
This can be especially true when it comes to children. Often the child becomes a math equation dehumanized to the point where the first thing asked when they come home from school is what their blood sugar is, and what did they eat to cause a problem, Apperson said. But their blood sugar may have nothing to do with what they did or didnt do sometimes blood sugars are beyond their control.
And this can lead the child later in life to dismiss the very real importance of balancing blood sugar to avoid dangerous complications. The tighter the fist when the child is younger, the less likely the child will take care of himself or herself down the line, Apperson said. The child sometimes has no way of putting things in context.
The worst situation is when a child is prevented from living fully because of diabetes, Apperson said. Say she was prohibited from going to a paintball birthday party, she said. The more that child experiences upheaval because of an overbearing parent the less likely she is to fall into line.
Parents have genuine reasons to be anxious, but it is important to look at the big picture, and they should ask themselves, what would I do if my child didnt have diabetes, would I let them go to that party or play that sport? Its incumbent on the parent to make that happen.
Its also important to expect some rebellion, a normal part of adolescent development. One of the things that I think is most effective is for parents to remember that teens will rebel, diabetes or not, and trying to prevent that will not likely be successful, said Dr. Marisa Hilliard, a clinical psychologist at Texas Childrens Hospital and Baylor College of Medicine. Instead, find ways to support them and stay involved in diabetes care throughout the teen years.
Parents should do their best to pay attention to what teens are doing right with their diabetes management. If they can get their schoolwork done, maintain friendships and outside interests, and learn to manage their diabetes at the same time, theyre doing many things right. Recognizing and reinforcing all of the hard work teens put into life with diabetes will be more successful than focusing on the problems.
That life should be sacrificed on the altar of diabetes is a misconception, these experts say.
Parents should understand that there is a lot they cannot control, Apperson said. It is not worthwhile for them to expend significant energy on a daily basis making everything secondary to diabetes, with other relationships suffering in terms of spouses, friends and other children in the family.
Nikki Nichols of Richland, whose daughter, Bella, was diagnosed four years ago at age 5, and whose husband also has had type 1 all his life, knows all too well. As much as I may manage her diabetes care and a lot goes into that I am simply the responsible person teaching my child how to properly care for herself, she said. Bella is the one who experiences the effects of a high or low blood sugar episode, who must wear her insulin pump or subject herself to constant needle pokes, who gets stares from other children because they see her checking her blood sugar.
Diabetes burnout is real, Hilliard said, especially in adolescence, and parents should be supportive. With so many demands of life with diabetes, teens get burnt out, so anything the parent can do to help lighten their load, for instance during finals helping them with blood sugar checks or insulin dosing for the week, can make all the difference, she said.
Its important for health care providers to remember that as well, Hilliard said. When you expect teens to be autonomous you will always be disappointed, she said. Diabetes is too much for any one person to manage alone. Give them resources and assistance rather than expecting them to win at a team sport as a single player.
Nichols says her daughter has been champion at this sport.
I do feel like Bella has grown up faster than her peers, and I know that she has days when diabetes pushes its way to the forefront and ruins her day, she said. We all struggle at times, but our overall attitude is that diabetes is just a part of our lives and we arent going to let it drag us down. Bella has been a role model to other kids whove been diagnosed with diabetes, and her tenacity is inspiring.
She is just a normal kid, who happens to be kicking diabetes butt when nobody is looking.
What: The Diabetes Foundation of Mississippis 2017 Super Conference
When: Feb. 18 (registration is at 8 a.m., and sessions will run from 9 a.m. to 12 p.m.)
Where: Marriott Hotel in downtown Jackson
Details: 601-957-7878 or visit msdiabetes.org
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