Helping Parents and Children Manage Diabetes in the Pediatric Patient
Beth Lavrinoff, MRC
Co-Chair, MICH Family Advisory Board
Parents are often charged with managing the complex levels of care when their child is diagnosed with diabetes. Due to this responsibility, often parents feel ashamed or guilty when their child’s blood sugar levels are not ideal and when their child acts symptomatic. Parents have to make sure to monitor foods that their kids ingest, the need to frequently monitor the level of sugar in their child’s blood to make sure the sugar is not too high, and not to mention, they have to administer frequent doses of insulin.
Meet Zaira Rivera-Diaz, a resident who has lived with Type 1 Diabetes since the age of 21. When Zaira was in college she studied long hours. In order to maintain a good healthy lifestyle she exercised a lot, which caused her to feel that she must drink a lot and eat too. Additionally, Zaira lost about 30 pounds! It was not until her parents visited her in college that they noticed that Zaira appeared sick. She was taken to the hospital and it was then that Zaira was formally diagnosed with Type 1 Diabetes. Zaira describes her symptoms as having occurred gradually (which is why she herself did not realize that she was ill). Years later, when Zaira came to work at Maimonides, she felt an enormous strength in the helpfulness and approachability of the Pediatric Endocrinology group. She wishes she would have had the guidance and support of this group during her initial diagnosis.
Zaira understands what it is like to be a patient who has a chronic illness that needs constant maintenance. Because she is a doctor, she lends a unique perspective. As a doctor, Zaira treats patients with the same chronic condition as her own. When a patient is diagnosed with Type 1 Diabetes she often approaches the family to show them that she has the same disorder. This makes the child and family feel relieved because they see a grown successful woman who has endured the same medical struggle. She has also found it helpful to inform families of famous celebrities and athletes who also have Type 1 Diabetes. She frequently points out that Halle Berry and Nick Jonas (of the Jonas Brothers) also have this condition. This information generally makes the patients and families smile.
Zaira utilizes a variety of techniques to help children and families come to terms with the diagnosis and management of their disease. A wonderful tactic that Zaira employs is something that she learned when she worked as a staff member in a camp specially designed for children with Type 1 Diabetes. When a child takes his/her own blood sugar, they should not view the number as their own, but rather as another person’s number. That way the children do not feel stressed about the number. They can just make the available medicine adjustment and go about their day. Zaira relates that children also tend to remember the date that they received the diagnosis and some children actually make a party on that day in order to turn the situation into a lighter one. This too encourages a more supportive atmosphere for the child going through the challenge.
Sharon is a mom of 2 children who require treatment for type 1 Diabetes, or childhood diabetes. She talks about the struggles of raising multiple children with the chronic illness. Often when doctors prescribe the treatment of diabetes, they may not understand how this affects the dynamics in the family. The food preparation is different. When others can dine out easily, families who are dealing with diabetes must be more cautious in the food preparation and selection. Also, children want to be like their peers and eat all the same foods. Imagine for a moment that your child attends a friend’s birthday party and cannot partake in eating the delicious birthday cake. Even an adult, who understands the rationale behind such limitations, may feel envious and sometimes even jealous of other’s who do not have these limitations. These days, making informed food choices/selections are a bit easier because of the enhanced selection of low carb foods that are readily available to buy; nutrition labels are mandatory on most packaged foods; and specialty diets are becoming more commonplace in today’s society (ex: gluten free diets, dairy free diets, nut free diets). It almost seems that everyone is on some kind of food modification or restrictive diet even if they have a “normal” body weight.
When patients and families have a good rapport with their physician and staff they feel comfortable to express their challenges with dealing with any situation that arises. Sharon expressed her satisfaction with the Endocrinologist’s perspective of children being children first and then having diabetes versus the term “Diabetic Child”. In her children’s situations she was told not to forbid foods and be overly restrictive. She was told to be vigilant of the blood sugar numbers so that the appropriate insulin can be given. When managed well by families and patients, children who have Diabetes have no limits on what they can accomplish in life physically, socially and economically. Parents and children need the right support and positive reinforcement in order to deal well with this particular illness.
Important points for physicians and staff to remember:
-get a better picture of the family and patient’s day
-understand that when certain treatments are prescribed it can affect the family system
-there is more than one way to treat families depending on their unique situations
-see a child who has a certain illness rather than an ill child
-remember that children have a strong need to blend into their social situations and food happens to be one factor in that dynamic