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 CSID. Parents/caregivers can assist infants and toddlers in developing a strong sense of security by holding, soothing, and interacting with the child as much as possible. Warm contact, gentle massage, or skin-to-skin contact could help soothe them when they are having abdominal pain or cramps. Never make your child feel guilty for potty accidents.


Work with your physician and/or registered dietitian (RD) to develop your infant’s/toddler’s diet, ensuring that nutritional needs are being met. Some infants and toddlers have a diagnosis of “failure to thrive” before diagnosis with CSID, so it is important for a physician and RD 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 cannot grasp the cause and effect nature of how their diet affects their symptoms. Preschoolers may start to challenge their parents/caregivers by refusing to take their medicine, throwing tantrums, or by sneaking and/or refusing foods. Parents/caregivers should have consistent expectations and enforce discipline as needed.


Never make your child feel guilty for potty accidents. Work to keep meals from becoming a battleground. Express sadness if necessary when a child has snuck food or is refusing to eat appropriate foods. Work with your child’s preschool to ensure your child’s diet and bathroom needs are met. Work with your physician and/or registered dietitian (RD) 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 than their peers. Parents/caregivers can help these children 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 medication, will help these children feel more in control.


Allowing them to choose food within the “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/or registered dietitian (RD) to develop your child’s diet, ensuring that nutritional needs are being met. Parents/caregivers can help these children start to develop resilience in facing a chronic condition like CSID and help them feel proud in the accomplishment 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. Parents/caregivers may find that other parents feel overwhelmed with the responsibility of hosting a child with CSID. If so, the parents/caregivers of a CSID child 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. They may feel left out of activities due to their diet restrictions. Parents/caregivers should provide empathy as needed. It is important for a parent/caregiver to provide appropriate food options for various activities. Encourage your child to carry a non-perishable “safe” snack for unexpected situations, where non-CSID appropriate food may be served. Work with your physician and/or registered dietitian (RD) 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. It is his/her body, and he/she will be the one adhering to the plan or planning to “cheat.” Giving older school-aged children 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 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/or about the digestive system and its processes. Encourage your child with CSID to interact with other children who have a chronic condition, food allergies, or an 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. A bully may target the condition as a reason to pick on your child, 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 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 your child’s 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 self-administer his/her medication at home or at school if you and his/her 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. Parents/caregivers who have been very involved in their child’s management of CSID may find it difficult to let go of their role as the primary caregiver. Many adolescents will go through times of denial regarding their CSID where they may neglect to take their medication(s) or follow their diet. As a parent/caregiver, assist your adolescent in maintaining control of his/her CSID management. 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 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/caregivers should, in all honesty, 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 (or child) sneaks food and eats something that makes him/her 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 his/her physician so they can talk alone about how CSID affects him/her.


Work with your physician and/or registered dietitian (RD) 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 them directly on their condition and enlist their help in managing their care.







College Students

Going to college is a major milestone for any student. This transition can be really exciting, but it could also be scary for a student with CSID. The best way to deal with that fear is to be prepared. By ensuring you have the right tools and have sufficiently planned for your healthcare needs at college, you are setting yourself up for success. Going away to college pushes you to new levels of independence that will contribute to your future health. Here are a few tips for managing CSID while at college.


  1. 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 1-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.
  2. Find a physician near your college. Some CSID patients choose to use Student Health Services for their medical care, while other college students with CSID use off-campus healthcare facilities. Either way, it is wise to establish medical care soon after arriving on your college campus. Be sure and bring your medical records with you.
  3. Consult what services your college may offer for students with chronic disorders. Most colleges have a Disability Services Center. Talking with these staff may warrant you needed accommodations such as unlimited restroom access or additional testing time if you are feeling sick.
  4. Stay in communication with your parents/caregivers. Keeping them informed regarding your health is wise, considering they can provide guidance and direction as needed.
  5. Make wise health 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 will entail you making wise decisions regarding your meals and snacks. Exercise and get plenty of rest to maintain health.
  6. Decide how much to tell your roommates, friends, and professors regarding CSID. This is a personal decision. Some patients 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/illness.
  7. 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 a student with CSID has concerns about sharing a restroom, or how far their dorm room is from the restroom, he/she should discuss it with someone on the housing staff. This could be initially embarrassing for the student, but housing staff will likely be accommodating.