Living with Sucrose Intolerance
Advice for Individuals and Caregivers Dealing with Sucrose Intolerance
Infants and Toddlers
Infants and toddlers are not able to understand what it means to be affected with Sucrose Intolerance due to Congenital Sucrase-Isomaltase Deficiency (CSID) or the related gastrointestinal symptoms that include abdominal pain, cramps, and discomfort. Infants and toddlers are just beginning to develop trust and a sense of security. Parents holding, soothing, gently massaging, and engaging in skin-to-skin interactions will allow infants and toddlers to develop a strong sense of security and comfort with their parents or caregivers, even through tough times.
It is important to work with your physician and/or registered dietitian to develop a diet plan for your infant or toddler to ensure that nutritional needs are being met, while at the same time minimizing painful symptoms. Before being diagnosed with CSID, some infants and toddlers are diagnosed with failure to thrive. Therefore, it is important for a physician or a registered dietitian to closely monitor the child’s growth.
As preschoolers develop a sense of independence, they may start to challenge their parents or caregivers by refusing to take their medicine, throwing tantrums, and sneaking or refusing foods. They understand what it means to feel sick, but they are usually too young to make the connection between their diet and their symptoms. This is an important milestone, and parents or caregivers should have consistent expectations and ample patience to enforce discipline as needed.
Bathroom accidents may continue to occur in preschoolers, and it is imperative that they know not to feel guilty. Work with the preschool staff to ensure their diet and bathroom needs are met. Diet is a crucial factor, so work with your physician and registered dietitian to develop a diet plan that fulfills your child’s nutritional requirements. Keep meals from becoming a battle. When a child avoids eating a food by hiding it or refuses to eat appropriate foods, an appropriate response is sadness or disappointment, not anger.
Younger, School-Aged Children
Younger, school-aged children are able to describe the reasons for their gastrointestinal symptoms and understand the basics of Sucrose Intolerance. At this age, children begin to sense they are different from their peers. They also begin to develop a sense of mastery over their surroundings. At this age, children may become more engaged in their care if their parents or caregivers allow them to begin to contribute to meal planning and preparations. These interactions help teach children affected by Sucrose Intolerance how to prevent their gastrointestinal symptoms.
By giving children choices, they feel more in control. Simple choices, such as where to sit to take their medication and how to administer the medication, can boost their self-esteem. Allowing them to choose food from a list of safe foods, cooking alongside the parent or caregiver, or developing their own recipe ideas may also work well. Parents or caregivers can help these children start to develop resilience in facing a chronic condition like Sucrose Intolerance and help them gain self-confidence. Meet with the staff at your child’s school to ensure diet and bathroom needs are met. Continue to work with your physician and registered dietitian to refine your understanding of your child’s nutritional requirements.
Encourage playdates and sleepovers since these events are very important to children at this age. Sending appropriate snacks and drinks, as well as medication, to a friend’s house for a sleepover or playdate is advised. If the other parents feel overwhelmed with the responsibility of hosting a child with Sucrose Intolerance, then the parents or caregivers of a child with Sucrose Intolerance should be prepared to host playdates and sleepovers instead.
Older, School-Aged Children
Older, school-aged children may feel left out of activities due to their dietary restrictions, so parents or caregivers should provide empathy as needed. It is important for a parent or caregiver to provide appropriate food options for activities where foods appropriate for those affected by Sucrose Intolerance may not be served. Nutritional needs must be met, so it is imperative to work with your physician and registered dietitian to develop your child’s diet plan.
At this age, a child is old enough to be included in the diet-planning process. Encouraging the child to contribute to menu ideas, food preparation, and grocery shopping for appropriate foods can be great ways to cultivate ownership of self-care. At this age, it is the child who may choose to adhere or not adhere to a diet plan. Giving older, school-aged children the power to contribute to the diet plan helps with their self-esteem and educates them about their future self-care.
Information and support can be especially empowering for children in this age group. Encourage your child to become more curious and knowledgeable about Sucrose Intolerance and the digestive system. It may also help them obtain a perspective about their own condition by interacting with other children who also have a chronic condition such as a food allergy or an illness that requires a special diet, such as diabetes, celiac disease, or cystic fibrosis.
Your encouragement can help your child better handle difficult situations, like bullying. Since Sucrose Intolerance produces embarrassing symptoms, such as frequent bathroom trips or gas, your child may become the target of a bully. Help your child maintain a strong sense of self-worth, pointing out that a bully does not deserve any time or attention. It is very important to include teachers and school officials when severe cases of bullying occur. All children deserve to feel safe at school. Work with your child’s school to ensure diet and bathroom needs are met. This age might also be a good time to teach your child how to self-administer medication at home or at school when you and the physician believe the child is ready.
During adolescence, self-image becomes extremely important as children begin developing their own identity. Assisting your adolescent in limiting the symptoms of Sucrose Intolerance continues to be important for parents or caregivers. However, your role as primary caregiver may be diminishing significantly. Parents or caregivers who have been very involved in the management of their child’s symptoms may find it difficult to relinquish control. Adolescents will likely go through times of denial regarding their diagnosis and may neglect to take their medication(s) or follow their diet. Remember that a teenager with Sucrose Intolerance is still a teenager, and these rebellious acts are normal.
Parents or caregivers should not be surprised if their adolescent is occasionally noncompliant with the diet recommended to limit symptoms. It may be necessary for teens to experience the symptoms of Sucrose Intolerance, perhaps to the point of missing an important event, to understand that eating that piece of cake was not worth it. Symptoms can sometimes be the most effective teacher. When teens sneak food and eat something that makes them sick, express your disappointment, but also side empathetically against the deficiency they must live with every day. A diet appropriate for those affected by Sucrose Intolerance is not easy for an adolescent to follow, especially as a lifelong diet.
Work with your physician or registered dietitian to develop your adolescent’s diet, ensuring that the nutritional needs of your growing teenager are being met. At this time, some gastroenterologists might recommend a first-time individual consultation with the teen. Now that the teen is old enough to understand, the physician can provide more in-depth information about Sucrose Intolerance and explain how to manage its symptoms. Sometimes it helps for a teen to discuss this condition in a one-on-one setting with a healthcare professional the teen views as objective.
Going to college is a major milestone for young adults as they move to new levels of independence. This transition can be a really exciting and possibly scary time in their lives, especially if they are sucrose intolerant. Preparation is the best way to deal with that fear. By ensuring they have the right tools to navigate their healthcare needs while away at college, they are setting themselves up for success. Here are a few tips that parents or caregivers and physicians can give to students for managing their Sucrose Intolerance symptoms while at college:
- As a new college student, educate yourself regarding Sucrose Intolerance. You should be able to explain what it is and how it affects you. Create a one-page document explaining Sucrose Intolerance in simple terms. Be aware of any other pertinent medical information, such as any allergies you may have or medications you may be taking. Be aware of the process for reordering your medications.
- Find a physician near your college. Whether you choose to use student health services or an off-campus healthcare facility for your medical care, it is wise to establish a relationship with a medical care provider soon after arriving on your college campus. Be sure to take your medical records with you.
- Find out what services your college offers students with chronic disorders. Most colleges have a disability services center. Accommodations are available to students with medical conditions, such as unlimited restroom access or additional testing time if you are feeling sick.
- Communicate with your parents or caregivers and keep them informed regarding your well-being. They are a great source of guidance, medical information, and support.
- Make wise health choices related to Sucrose Intolerance. Exercise and get plenty of rest to maintain your health. It can be tempting to eat forbidden foods while away at college, but try to follow a diet appropriate for those affected by Sucrose Intolerance.
- Decide who you want to tell about your Sucrose Intolerance. Some students try to keep their medical situation private, while others have found it beneficial to share their condition with roommates, friends, and professors. Your college campus may offer a support group for students dealing with chronic disorders and illnesses.
- Be aware of your housing situation and how it could affect you. Common restroom facilities shared by students in a dorm are sometimes required for incoming freshman. If you have concerns about sharing a restroom or the distance to a restroom, discuss the issue with someone on the college housing staff.
Adults with Sucrose Intolerance
If you are an adult with Sucrose Intolerance, your condition may add a layer of difficulty as you learn how to navigate life’s obligations, including work, social, romantic, and healthcare provider relationships. Like most adults with Sucrose Intolerance who are able to work, you need to determine how much to tell your employer about your gastrointestinal symptoms. As an employee, you may need specific accommodations – like having your workspace near a restroom or access to a special menu for any work-sponsored meals.
Since social events are often food-centric, you must learn to navigate ordering food at a restaurant and handle situations when others are preparing your food. You also need to scout out access to restrooms for those days when you are out and about with coworkers, friends, and family. Because Sucrose Intolerance symptoms can be socially embarrassing, you must determine how much information you are willing to share.
Establishing a positive working relationship with a physician and any other healthcare providers, such as a registered dietitian, is very important for adults with Sucrose Intolerance. You may have weight concerns or nutrient and mineral deficiencies, so working with appropriate medical staff is critical to address those needs.
Sometimes it is difficult to find a local healthcare team that is well-versed in dealing with Sucrose Intolerance. In these situations, it can be beneficial to establish a relationship with a local medical team that is willing to work with you, as you and the team together learn how to manage your condition. Being an adult with Sucrose Intolerance requires planning and preparedness, so arm yourself with information on your condition that will help you feel more comfortable meeting life’s challenges.