Growing up with CSID
Infants and Toddlers
Infants and toddlers are just beginning to develop trust and a sense of security. They will have very little understanding of Congenital Sucrase-Isomaltase Deficiency (CSID). As a parent or caregiver, you can assist your infant and toddler in developing a strong sense of security by holding, soothing, and interacting with them as much as possible. Warm contact, gentle massages, and skin-to-skin contact may help soothe them when they are having abdominal pain or cramps. Never make your toddler feel guilty for potty accidents.
Work with your physician and registered dietitian to develop your infant’s or toddler’s diet, ensuring that nutritional needs are being met. Some infants and toddlers have a diagnosis of “failure to thrive” before being diagnosed with CSID, so it is important for a physician and registered dietitian to monitor your child’s growth closely.
Preschoolers are beginning to develop a sense of independence. They may understand what it means to feel sick, but they may not grasp the cause and effect nature of how their diet affects their symptoms. Preschoolers may start to challenge you by refusing to take their medicine, throwing tantrums, or sneaking or refusing foods. You should have consistent expectations and enforce kind but firm discipline as needed.
Try to keep meals from becoming a battleground. Work with your child’s preschool staff to ensure diet and bathroom needs are met. Speak with your physician and registered dietitian to develop your child’s diet, ensuring that nutritional needs are being met.
Early School-Aged Children
Early school-aged children are beginning to develop a sense of mastery over their environments. They can describe the reasons for their symptoms and have a basic understanding of CSID. Children also begin to sense they are different from their peers. You can help by allowing them to assist in the management of their CSID. Giving choices as to medicine administration, such as what type of cup or where to sit to take the medication, helps them feel more in control.
Allowing them to choose food from a “safe-foods list” is a good idea. Allowing them to cook alongside you or develop their own recipe ideas may also work well. Work with your physician and registered dietitian to develop your child’s diet, ensuring that nutritional needs are being met. You can help children start to develop resilience in facing a chronic condition like CSID and help them feel proud of mastering a difficult diet. Work with your child’s school to ensure your child’s diet and bathroom needs are met.
Play dates and sleepovers become important at this age and should be encouraged as much as possible. Sending appropriate snacks and drinks to a friend’s house, as well as needed medication, are advised. You may find that other parents feel overwhelmed with the responsibility of hosting a child with CSID. If so, you should be prepared to host play dates and sleepovers as necessary.
Older School-Aged Children
Older school-aged children are more capable of understanding CSID and may feel left out of activities due to their diet restrictions. You should provide empathy as needed. It is important for you to provide appropriate food options for various activities. Encourage your child to carry a nonperishable “safe” snack for unexpected situations where non-CSID 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, a child is old enough to be part of the diet-planning process. Giving older school-aged children the power to contribute to the food plan helps them develop a sense of self and educates them about necessary information for future self-care. Asking for their input on menu ideas, involving them with food preparation or in 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 CSID and about the digestive system and its processes. Encourage your child to interact with other children who have a chronic condition, food allergies, or illness that requires a special diet. Because CSID is rare, it may be difficult to find another child with CSID in your area. Encourage your child to speak with children who have similar conditions that require special diets such as a child with diabetes, celiac disease, and/or cystic fibrosis.
Sometimes, a child with CSID may be a target for bullying, especially when CSID produces embarrassing consequences like frequent bathroom trips or gas. Help your child maintain a strong sense of self-worth, pointing out that bullying efforts do not deserve your child’s time or attention. Working with teachers and school officials to combat severe instances of bullying is very important. All children deserve to feel safe at school. This age might also be a good time to teach your child to self-administer medication at home or at school if you and the physician believe your child is ready.
Adolescents begin to develop their own identity separate from their parents, caregivers, and family. Self-image becomes extremely important. Those of you who have been very involved in your child’s management of CSID may find it difficult to let go of your role as the primary caregiver. Many adolescents will go through times of denial regarding CSID and neglect to take their medication or follow their diet. You can assist your adolescent to maintain control of diet and medication. Remember that a teenager with CSID is still a teenager. You should expect normal adolescent development that often includes rebellious acts against rules.
Adolescents may make poor choices when it comes to diet. This is to be expected considering their developmental stage. Symptoms resulting from these 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. In all honesty, you should expect the occasional noncompliance with the CSID diet.
We are all human, and a CSID-appropriate diet is not easy to follow, especially as a lifelong diet. When a teen sneaks food and gets sick, express your disappointment, but also side with your child against CSID. Make CSID 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 teen’s physician so they can talk alone about the effects of CSID.
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 the first individual consultation to help educate your teen about CSID and enlist their help in managing their care.
Going to college is a major milestone for any student. This transition can be really exciting, but it may also be scary for a student with CSID. The best way to deal with that fear is to be prepared. By ensuring your student has the right tools and has sufficiently planned for healthcare needs at college, you and your college-bound child are setting yourselves up for success. Going away to college pushes one to new levels of independence that will contribute to future health. Here are a few tips you can give your college student for managing CSID while at college.
- Educate yourself regarding CSID. You should be able to explain what CSID is and how it affects you. Because CSID is a rare disorder, you may want to create a one-page document explaining CSID in simple terms. Also know any other pertinent medical information, such as your medications and any allergies you may have. If you take medications, you should understand the process of reordering them.
- Find a physician near your college. Some CSID patients choose to use Student Health Services for their medical care, while others use off-campus healthcare facilities. Either way, it is wise to establish medical care soon after arriving on your college campus. Be sure to take your medical records with you.
- Consult whatever services your college may offer for students with chronic disorders. Most colleges have a Disability Services Center. Talking with the staff may help you establish needed accommodations such as unlimited restroom access or additional testing time if you are feeling sick.
- Stay in communication with your parents or caregivers. Keeping them informed about your health is wise, considering they can provide guidance and direction as needed.
- Make wise, healthy choices related to CSID. Regarding diet, it can be tempting to eat forbidden foods while away at college. You should be able to follow a CSID-friendly diet while at college, but this means making wise decisions about your meals and snacks. Exercise and get plenty of rest to maintain your health.
- Decide how much to tell your roommates, friends, and professors regarding CSID. This is a personal decision. Some students try to keep their medical situation private, while others have found it beneficial to share. Your college campus may offer a support group for students dealing with chronic disorders or illnesses.
- Understand your housing situation and how that could affect your CSID. Some college campuses require freshmen to live on campus in dorms that have common restroom facilities. If you have concerns about sharing a restroom or how far your dorm room is from the restroom, discuss it with someone on the housing staff. This could be initially embarrassing, but housing staff will likely be accommodating.