Informing Daycare or School About Your Child’s Sugar Intolerance

Informing Daycare or School About Your Child’s Sugar Intolerance

Here’s how to make sure the people watching over your child understand their food, bathroom, and any other CSID needs.

Informing Daycare or School

It’s one thing to keep sucrose-intolerant children safe and healthy at home where you can monitor what they eat and keep sweet treats out of the house.

But it’s quite another when they go off to school or daycare where cookies, cupcakes and other sugary snacks might be served. How can you ensure they will eat safely and healthily when they’re with their teacher, childcare providers, and peers?

The key is planning ahead and communicating with staff about your child’s needs.

Your child’s Sucrose Intolerance caused by Congenital Sucrase-Isomaltase Deficiency (CSID), informally called “Sugar Intolerance,” is a rare disease, so most people — including some doctors — have never heard of it.

This general lack of knowledge means you not only have to educate your toddler or school-age child about managing the condition, but you also need to educate those who oversee your child during the day.

“It is extremely important to inform your child’s school or daycare about your child’s condition,” says Parul Kharod, MS, RD, LDN, a clinical dietitian who leads food allergy support groups for WakeMed Health and Hospitals in Raleigh, North Carolina.

“You need to ensure your child’s safety and well-being and prevent him from being served something he shouldn’t be eating.”

Here’s how to work with your child’s school or daycare:

Start with a letter from your physician. Ask your pediatrician or pediatric gastroenterologist (also referred to as a pediatric GI doctor, which is a specialist in stomach disorders in children) to write a letter to the school or daycare explaining your child’s Sugar Intolerance and how to avoid and manage symptoms.

“In case of any emergencies, the school may need to contact the physician,” says Kharod. “So it is important to have all the contact information and a detailed plan given to the school or daycare.”

Follow up with meetings in person. Schedule meetings with your child’s daycare provider or teacher, the school principal, school nurse, and counselors.

Explain the severity of your child’s condition while, at the same time, making it clear that Sucrose (sugar) Intolerance is not life-threatening.

Help them understand that symptoms can be upsetting or embarrassing for your child when they occur, and feeling anxious and uncomfortable makes it hard for your child to learn.

“It’s important to prepare the school staff for any incidents,” says Kharod. “Sucrose Intolerance can cause chronic diarrhea or gas and there may be accidents. Parents should talk to the school staff to ensure that the child’s diet and bathroom needs are met, and that he’ll be treated with respect.”

Find out if your child’s teacher uses any type of food reward in class. And discuss how your child can be included during snack time, lunchtime, birthday celebrations, classroom parties, field trips, and other school-wide activities.

Perhaps your child requires special lunches prepared by the cafeteria or permission to visit the school nurse for medication or to cope with symptoms, when necessary.

Other classroom accommodations might include a seat near the bathroom entrance and access to a change of clothes in case an accident occurs, including vomiting, which can also be a symptom of CSID.

Whatever plan you put in place, be sensitive to your child’s feelings. “Food intolerances may cause some anxiety because it makes a child feel different and even alienated,” says Kharod.

Provide easy-to-follow instructions and the right supplies. Give the school or daycare a list of CSID-safe foods for your child, a list of medications and instruction for administration, an extra set of clothes, a water bottle, safe snacks that don’t require any preparation, and any other supplies that would help your child and the staff.

Practice with and prepare kids at home. At home, practice saying “No, thank you” with your toddler or school child when sweet treats are served.

And teach children how to explain their condition in terms other kids can understand, such as “Sugar makes my stomach hurt.”

It’s also a good idea to have a pediatric dietitian work with your child to help him learn how to make smart food choices at school.

“Younger children may not fully understand the reason for their food restrictions, which can cause confusion,” says Kharod.

It might be challenging to help them be clear about which foods can make them feel sick and which may not. For example, your child will likely hear from others that apples and bananas are healthy — but those fruits aren’t likely to be “healthy” for them.

“As kids get older, they will know what they can and cannot tolerate,” she adds. “Parents can talk with older children and have a strategy for play dates, school trips, birthday parties, sleepovers, camps, and any other activity involving food, so older children can participate in all these events without the [issues little ones have].”

Research school policies in your state. “There are no specific school policy guidelines for food intolerances,” says Kharod. “However, the same protocols for allergies can be used for intolerances especially with CSID, since it’s a diagnosable condition.”

Find out if your state and/or school district has a food allergy policy. Allergy guidelines vary by state and also by school district, though some federal policies may be the same.

Ask the daycare and school staff to be your eyes and ears. “Ask your child’s teachers and school counselors to alert you if they observe any sudden behavior changes in your child.”

You’ll also want to know if your child is being teased or bullied because he has to follow a special diet.

If your child starts to develop some kind of school phobia, talk to the school psychologist or seek out a psychologist or other talk therapist, such as a social worker, who specializes in working with children. They are trained to help kids deal with anxiety, depression, and other emotions that can emerge from living with the realities of a chronic disease.

Sucrose Intolerance may be more common than you think.