Tweens and teens with Genetic Sucrase-Isomaltase Deficiency (GSID) may face some unique issues related to their cognitive and emotional development. The two sections below describe some tips parents and caregivers can use to help these young people understand and manage their sucrose intolerance.
Even though most older school-aged children and tweens understand the aspects of GSID, they may feel left out of activities due to their diet restrictions. It is up to you to provide empathy as needed. Not only is empathy needed, you should provide appropriate food options for various activities. Encourage your child to carry a non-perishable “safe” snack for unexpected situations where non-GSID appropriate food may be served. Work with your physician and registered dietitian to develop your child’s diet, ensuring that nutritional needs are being met.
At this age, children are old enough to be part of the diet planning process. It’s their bodies, and they will be the one adhering to the plan or planning to “cheat.” Giving tweens the power to contribute to the food plan helps them develop a sense of self and educates them on necessary information for future self-care. Asking for their input on menu ideas, involving them with food preparation or grocery shopping for “safe” food items can be great ways to cultivate ownership of self-care.
Information and support can be especially empowering for this age group. Encourage your child to read information about GSID, about the digestive system and its processes, and to meet and talk with other children in the same situation. Because GSID is rare, it may be difficult to find another child with GSID in your area so encourage your child with GSID to interact with children who also have a chronic condition, food allergies, or an illness such as diabetes or celiac disease that require a special diet.
Sometimes a child with GSID may be a target for bullying. A bully may target the condition as a reason to pick on your child, especially when GSID produces embarrassing consequences like frequent bathroom trips or gas. Help your child maintain a strong sense of self-worth, pointing out that a bully does not deserve your child’s time or attention.
Working with teachers and school officials to combat severe instances of these situations is very important. All children deserve to feel safe at school. Work with the school to ensure your child’s diet and bathroom needs are met. This age might also be a good time to teach your child to monitor food choices. If your child is taking any medications, it might also be a good time to teach how to self-administer these medications at home or at school.
Teens begin to develop their own identity separate from their parents, caregivers, and family. Self-image becomes extremely important. Parents who have been very involved in their child’s management of GSID may find it difficult to let go of their role as the primary caregiver. Many adolescents will go through times of denial regarding their GSID where they may neglect to follow their diet or other parts of the treatment plan that are designed to control their GSID symptoms. As a parent or caregiver, assist your teen in managing GSID. Remember that a teenager with GSID is still a teenager. You should expect normal adolescent development that often includes rebelling against rules.
In addition, adolescents may make poor choices when it comes to diet, choices that can be expected considering their developmental stage. The resulting symptoms of poor choices can sometimes be the most effective teachers. It may be necessary for a teen to experience diarrhea to the point of missing an important event to understand that eating that piece of cake was not worth it. Parents should expect the occasional noncompliance with the GSID diet. A GSID-appropriate diet is not easy to follow, especially as a lifelong diet.
When teens sneak food and eat something that makes them sick, express your disappointment but also side with your child against GSID. Make GSID the bad guy, not you or your child. Empathize while telling your teen that this situation is not ideal. Rely on the authority of professionals to support your position. If necessary, schedule a patient-only appointment with your child’s physician so they can talk alone about how GSID affects the teen.
Work with your physician and registered dietitian to develop your adolescent’s diet, ensuring that nutritional needs are being met. Some gastroenterologists might recommend adolescence as the best time to schedule a first-time, individual consultation to help educate teens face-to-face on their condition and enlist their help in managing their care.