Monitoring and Managing Your Child’s Sugar Intolerance
A baby or older child who’s newly diagnosed with Sucrose Intolerance – informally called “Sugar Intolerance” – caused by Congenital Sucrase-Isomaltase Deficiency (CSID) means your child is unable to properly digest foods that have certain sugars in them. In all likelihood, as a parent, you’re looking for help on how to navigate this condition.
Sucrose (sugar) Intolerance is a lifelong condition, but it can be managed through diet and medication once you learn the basics.
Here’s Sucrose Intolerance help for parents of a newly diagnosed child, from infant to toddler, grade schooler to tween, to teen.
Your CSID Support System
After getting a definitive diagnosis, it’s time to put together a support team.
Doctor. Your pediatrician or pediatric gastroenterologist, commonly called a GI, has diagnosed your child’s CSID and may recommended a registered dietitian (RD) and prescribed medical treatments now available for managing Sugar Intolerance.
Registered dietitian (RD). An RD is trained in diet and nutrition. Ideally, you want to see one who specializes in pediatrics. Even if they aren’t familiar with CSID because it is a rare condition, they will know how to guide you to come up with a food plan that meets your child’s nutritional needs.
Your pediatrician may refer you to an RD. If not, your health insurer should be able to identify someone in your network.
Daycare and/or grade school staff. Once your child is old enough to leave your 24/7 care, it’s important to educate those now entrusted with your child’s care. Talk to them about your child’s food limitations and symptoms, such as bathroom needs that may arise.
There are simple ways to explain your child’s condition to others. For example, let them know that certain sugars and starches (chains of sugars) give your child stomach pain and diarrhea, among other uncomfortable symptoms.
Give them a cheat sheet of good and bad foods.
You can also give daycare and school staff a letter from your pediatrician that explains your child’s food guidelines and how to avoid and manage symptoms when they do occur.
Ask staff to tell you about any symptoms your child has while in their care and to record what your child ate beforehand to help you and your RD modify your food plan.
This way, not only are they keeping your child on track, they are also eyes and ears to help you know if problems arise.
Family members and others who watch over your child. When your child is under the care of family members, babysitters, or even the parents of your child’s friends who have your kid come over for a meal or birthday party, it’s equally important to fill them in on CSID eating do’s and don’ts and symptoms.
Mental health professional. Along with paying attention yourself, ask other adults who spend time with your child to be on the lookout for any emotional health symptoms they might notice, such as your child becoming withdrawn or depressed.
Staff can let you know if they see playmates or classmates who may be making fun of your child if he is having a lot of embarrassing stinky farts or bathroom runs. We all remember the stress of wanting to fit in with our friends, along with the inevitable “mean girls” and “bully boys” on the block or in the school.
Managing a lifelong disease (also called a “chronic illness”) has its ups and downs, and it’s important to get help for children if they’re going through a rough patch.
Therapists and social workers who do talk therapy can help children deal with their feelings.
CSID Food Do’s and Don’ts
Children’s diets are essential in managing their Sugar Intolerance since eating foods that aren’t well tolerated will trigger symptoms – fast.
It’s a good idea to note any new or recurring symptoms, along with what your child has eaten close to when those symptoms occur (more loose stools, gassiness, bloating, stomach pain, vomiting). Ask caretakers to do the same. This information will help you and your healthcare team better manage your child’s treatment and diet.
An early diagnosis can be an advantage, as children who are diagnosed when they are young grow up accustomed to planned meals and their special diet. Have everyone share in the same foods at mealtimes to help your child feel more comfortable with the diet.
Quick Tips: Toddlers
Communication: In age-appropriate language, help toddlers learn to tell you or a caregiver when they’re not feeling well or need to use the bathroom.
Soothing, not scolding: Make sure caregivers know that they should never scold or punish children if they eat the wrong thing or have an accident. If children have painful symptoms after eating something sugary, comfort them.
Quick Tips: School-Age Children
Communication and education: As children get older and can better understand their food intolerance, teach them to say no to foods they can’t eat if others are offering them. It can be as simple as: “I have a stomach problem, and I’ll feel sick if I eat something I’m not supposed to.”
It’s important to let children know that even if an adult tells them that a particular fruit or vegetable is healthy, it might be a food that does not agree with their tummy.
That’s because not all the foods they need to avoid have sugar added to them. Some fruits and veggies naturally have sugars in them, which is why, even though those foods have vitamins and minerals, they aren’t good for someone with CSID.
Facts about feelings: At this age, children can begin to feel sensitive about being different, so discuss with your child’s teachers how they can help your child feel included during snack time, lunchtime, classroom parties, and field trips.
For example, ask if you can bring in treats for the teachers to keep on hand for birthday celebrations so your child doesn’t feel left out or tempted to eat something she shouldn’t.
“The good news is that information about…food intolerances is more common now, which is helping remove the stigma around having things you can’t eat,” says Raza A. Patel, MD, MPH, pediatric gastroenterologist in Salt Lake City, Utah. “People are more comfortable now in terms of asking what’s in their food or letting people know about issues they have.”
Request regular check-ins with your child’s teachers so you can assess how your child is doing socially. Ask teachers to tell you right away if your child has any stomach pain or other symptoms, or if they see your child acting withdrawn or being teased.
Quick Tips: Tweens and Teens
Peer pressure pointers: This age can be a tricky time for your child and for you. The last thing a tween or teen wants is to feel different, in any way. And, often, the other last thing they want is for mom and dad to advise them.
Talk to tweens or teens about their food intolerance in a way that’s comfortable for them to think about it and talk about it with others. If they stick with their diet and any prescribed medical treatment, they will feel good. It’s that simple.
Truth or consequences: Remind your tween or teen that trying to fit in by eating the wrong foods can have consequences. Painful CSID symptoms can be triggered, and that can create a problem because of having to manage those symptoms while with friends.
“We talk to families and patients about what level of comfort they have in discussing it,” says Dr. Patel. “Some kids are more private about it and don’t want the world to know what’s going on with their bodies. But some are more open and don’t mind letting people know.”
As kids spend more time away from home, out with friends or during afterschool activities, pack snacks they can take with them, or make sure they have cash to buy good-for-them-food as needed.
Breathe: Believe it or not, as your child gets older, managing CSID becomes easier for both of you. With the right treatment and management, a child who has a Sugar Intolerance can live a long, happy, and healthy life.