Helping Your Toddler Adjust to CSID

How Can I Help My Toddler Adjust to Life with Sugar Intolerance?

Here are the expert tips and advice you need to explain Sucrose Intolerance caused by CSID to a little one — including why getting diagnosed at this age is actually good news.

Helping toddlers adjust to CSID

The road to getting a child diagnosed with Sucrose Intolerance, informally called “Sugar Intolerance,” can be long and bumpy. That’s because the symptoms of Congenital Sucrase-Isomaltase Deficiency (CSID) – chronic diarrhea, bloating, gas, and stomach pains – can be easily confused with other stomach conditions.

Navigating the world of low-sugar living has its challenges, too. In addition to getting a correct diagnosis and learning about treatment, parents need to learn which foods their toddlers should avoid.

Meeting these challenges involves several things, including knowing what groceries to buy, how to read food labels, questions to ask waiters when dining out, and talking to whomever is taking care of your youngster when you’re not.

Overall, it’s needing to advocate for young kids with Sugar Intolerance while also teaching them how to advocate for themselves. When they’re this young, that can be challenging.

The Good News for Toddlers with CSID

The earlier Sucrose Intolerance is diagnosed, the easier it is for children to adjust.

Planned meals and supplements become the only reality kids know, says Bradley Jerson, PhD, a pediatric psychologist in digestive diseases, hepatology, and nutrition at Connecticut Children’s Medical Center in Hartford, CT. “Young kids with CSID typically grow up to function quite well with it.”

Being positive, patient, and proactive go a long way. So does educating yourself about the terminology of the disorder and how it affects your child’s body, which builds your little one’s confidence — and yours, too.

“We always encourage the whole family to learn about CSID,” says Parul Kharod, MS, RD, LDN, a clinical dietitian who leads food allergy support groups for WakeMed Health and Hospitals in Raleigh, North Carolina.

“Young patients need everyone’s support, including siblings, grandparents, and babysitters.”

More Strategies for Young Ones with CSID

Comfort your child, no matter what. Take your toddler’s complaints seriously when symptoms strike. Gas, bloating, and stomach pain can be severe in tots with CSID.

You probably know that infants find gentle massage and skin-to-skin contact soothing. For toddlers and preschoolers, warm hugs, back rubs and reassurance that their symptoms will soon pass helps.

And “no matter what” means never punish a child for eating the “wrong” foods or make them feel guilty for potty accidents.

Use toddler-like terms. To help them understand what their sugar digestion condition means, use simple words to explain that certain foods can make people feel different ways and that some foods make us feel good and some can make us feel sick.

Kharod uses a fuel analogy when explaining a food intolerance to kids.

“I tell children that food is our fuel and depending on what kind of engine they have, that’s the type of fuel it needs,” she explains.

“Let’s say your fuel is gasoline, and that’s what makes your engine run. But what if you put diesel fuel in it? Something is going to go wrong.”

Sharing a comparison like this can be helpful as long as you use words that you know preschoolers understand.

Find words for how they feel. You want to enable young ones to not only understand what it means when they’re not feeling well, but to also come up with the right words to describe it to you (and others who may be caring for them): “I have a tummy ache” or “I have to go potty,” for instance.

“The more practice a little one has at identifying his symptoms and articulating his needs, the more capable he’ll be at managing them,” says Laura Gibofsky, MS, RD, CSP, CDN, a pediatric dietitian at the Hospital for Special Surgery in New York City.

“You want to make sure that from an early age, children with CSID know what to do, because they’re going to have to manage this condition their entire lives.”

Be positive. Model confidence and resilience whenever you can around your toddler. Maintain an upbeat attitude about food by focusing on what your child can eat instead of what they can’t.

“Don’t make CSID sound like something terrible,” Kharod cautions.

Children are highly influenced by the coping styles of those around them.

Build a good team. Work with a trusted physician and registered dietitian (RD) who answer your questions, help you make good decisions, and are committed to making sure your little one gets the nutrients needed to grow and stay healthy are key.

“Sometimes it takes time to find a doctor or medical group you feel comfortable with,” says Gibofsky. “Follow your instincts. If you’re not happy with your current provider, then change providers.”

Your best bet when it comes to a doctor who recognizes Sugar Intolerance is a specialist called a pediatric gastroenterologist, commonly called a GI.

Sucrose Intolerance may be more common than you think.