Caregivers and Parents of Children with CSID

When working with schools, family, or anyone who may be charged with the responsibility of your child’s care, it’s important to proactively provide them with basic information about Congenital Sucrase-Isomaltase Deficiency (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.

Many adults want to offer treats to children. You must educate those who interact with your child about how those treats can result in unintentional negative outcomes. 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.

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

CSID is a chronic, congenital condition that will not go away with gradual exposure to sucrose in the diet or with time. You should not assume that people around you will instantly understand. 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 the 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 the situation to the best of their ability.

It may be necessary to use 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.