Caregivers/Parents of Children with CSID

It is important when working with schools, family, or anyone who may be charged with the responsibility of your child’s care to proactively include them regarding basic information about CSID. Careful consideration should be given to the educational process you implement. Keep it positive, keep it simple, and be gracious but clear about needs and expectations. When explaining the nuances of your individual case to extended family or caregivers, using common phrases such as, “Yes, even one cookie can hurt” can help break down the complexity of the disease to a more commonly understood level. Many adults want to offer treats to children. Parents/caregivers must educate those who interact with their children on how those “treats” can result in unintentional negative outcomes for the child.


Parents/caregivers and siblings go through a learning period by which they come to fully understand the physiological ramifications of CSID and cheating on the diet (eating too much sucrose or starch). Other people in your child’s life will also need to take time to learn. The same vigilance is necessary on your part to teach those who are around the child also.


CSID is a chronic, congenital issue that will not go away with gradual exposure to sucrose in the diet or with time. It should not be assumed that people around you will instantly “get it.” Appreciate it when they do gain understanding or have empathy, but you should not expect it. Consider the time it took you to become the parental expert and the time it took your child to understand his/her diet, and realize that those people around your child may not be able to have the same time commitment. Most adults do not intend to harm your child, but expecting them to fully understand life with CSID is probably unrealistic. Your job is to educate those who are involved in your child’s care so that they can understand to the best of their ability.


It may be necessary to utilize a “safe foods” list or a “foods to avoid” list customized to the individual needs of your child. Such lists should be developed in cooperation with a physician or registered dietitian (RD).