How Sucrose Intolerance Affects Children
Children with Sucrose Intolerance caused by Congenital Sucrase-Isomaltase Deficiency (CSID) may face some unique issues related to their cognitive and emotional development. Let’s take a look at some actions you, as parents, can take to help them better deal with all the issues they face.
Infants and Toddlers
First of all, help your infant or toddler to develop trust and a sense of security. Since they will have very little understanding CSID, you can assist them in developing a strong sense of security by holding, soothing, and interacting with them as much as possible. Warm contact, gentle massage, and skin-to-skin contact can help soothe them when they are having abdominal pain or cramps.
Secondly, ensure that their nutritional needs are being met by working with your doctor and a registered dietitian to develop their diet. Some infants and toddlers may have a diagnosis of “failure to thrive” before they are diagnosed with CSID, so it is important for your doctor and registered dietitian to monitor your child’s growth closely.
Once they begin potty training, realize that they are going to have accidents. Be sure that you never make them feel guilty for their little mishaps, either when they are toddlers, preschoolers, or early school-aged children.
As they grow older, your preschoolers are beginning to develop a sense of independence. They may understand what it means to feel sick, but they can’t grasp the cause and effect nature of how their diet affects their symptoms. That means that they may start to challenge you by refusing to take their medicine, by throwing tantrums, or by sneaking foods they shouldn’t eat and refusing foods they should eat. Just as you would with a child without CSID, you should have consistent behavioral expectations and enforce discipline as needed.
Sometimes, it takes a lot of work to keep meals from becoming a battleground. When your child sneaks food or refuses to eat appropriate foods, express sadness if necessary, but never anger.
Not only do you need to pay attention to what goes on in your home, you also need to work with your child’s preschool to ensure your child’s diet and bathroom needs are being met. Continue working with your doctor or registered dietitian to ensure your child is eating nutritious meals and snacks.
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 they have a basic understanding of Sucrose Intolerance. They also begin to sense they are different from their peers. You can help them become more independent and self-sufficient by allowing them to assist in the management of their disorder. Giving choices for medicine administration, such as what type of cup to use or where to sit to take medication, helps them feel more in control.
Allowing children to choose foods 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, always ensuring their nutritional needs are being met.
You can also help them start to develop resilience in facing a chronic condition like CSID. Make them feel proud in the accomplishment of mastering a difficult diet. Throughout these childhood years, work with their school to ensure their diet and bathroom needs are met.
Play dates and sleepovers become important at this age and should be encouraged as much as possible. To avoid issues, talk with the parents of their friends and send appropriate snacks and drinks along with any needed medication to the friend’s house. Sometimes, you’ll find that other parents feel overwhelmed by the responsibility of hosting a child with CSID. If so, be prepared to host play dates and sleepovers in your own home, keeping in mind that you want to make your child’s life as normal as possible.