A child with Genetic Sucrase-Isomaltase Deficiency may face some unique issues related to their cognitive and emotional development.
Infants and Toddlers
Infants and toddlers are just beginning to develop trust and a sense of security. They will have very little understanding of GSID. Parents 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 GSID, 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 by refusing to take their medicine, throwing tantrums, or by sneaking and/or refusing foods. Parents 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 GSID. Children also begin to sense they are different than their peers. Parents can help these children by allowing them to assist in the management of their disorder. Giving choices for medicine administration, such as what type of cup or where to sit to take medication, will help these children feel more in control.
Allowing children 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 can help these children start to develop resilience in facing a chronic condition like GSID, 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 may find that other parents feel overwhelmed with the responsibility of hosting a child with GSID. If so, the parents of a GSID child should be prepared to host play dates and sleepovers as necessary.