Diagnosing, Treating Feeding Problems in Hyperinsulinism

Q: My baby with HI won’t eat. Does she have a feeding disorder?

A: Maybe. Many children have trouble eating and/or drinking. Feeding difficulties are very common, seen in 25 to 50 percent of typically developing children and up to 80 percent of children with developmental delays. A study in Great Britain found that about a third of children with hyperinsulinism (HI) has some sort of feeding problem.

However, some worrisome feeding behaviors are actually normal at certain ages. For example, most babies are not developmentally ready to start spoon feeds until they are 6 months old. If the baby who won’t eat is 5 months old, then she does not have a feeding disorder. Signs of developmental readiness to start solids include sitting independently, mouthing hands and toys, and appearing interested in caregiver’s foods.

Another symptom that concerns parents but may be normal behavior is pickiness. Most toddlers are picky eaters. This helps protect them from ingesting unsafe items as they become more mobile and able to explore their environment. Pickiness becomes a concern when a child eats less than 10 to 15 foods, does not eat at least one food from every food group, and does not add new foods when they drop others foods from their diet.

Q: So what is a pediatric feeding disorder, and what can I do about it if my child has one?

A: “Pediatric feeding disorder” was recently defined by an expert panel as impaired oral intake that is not age appropriate, and is associated with medical, nutritional, feeding skill and/or psychosocial dysfunction.

A picky toddler does not have a feeding disorder unless he’s pickier than other kids his age and his pickiness is associated with problems medically (like constipation), nutritionally (like a vitamin deficiency), with his feeding skill (such as if he has not learned to chew because he will not eat any chewable foods), and/or psychosocially (he does not attend birthday parties because he will not eat the foods typically served there).

How do we address feeding issues? First, we must look for and treat problems that may be contributing to the feeding disorder. For example, if a child is uncomfortable because they have gastroesophageal reflux and/or constipation, it is not surprising that they may not want to eat.

For children with hyperinsulinism, there are several issues that may contribute to feeding difficulties:

• High insulin levels can suppress appetite.
• The need for frequent feeding to maintain blood glucose stability can lead to stressful mealtimes.
• The medications used to treat HI may have an unpleasant taste and/or lead to slow stomach emptying, causing a negative association with eating or drinking by mouth.

Once contributing factors are managed as well as possible, we can start to address the feeding disorder directly. If a child has delays in her feeding skills, then developmental therapists such as occupational therapists and speech-language pathologists can help target goals such as self-feeding with utensils and chewing skill progression.

Pediatric psychologists and other behavioral health specialists can help with stressful mealtimes, mealtime structure (for example, limiting meals to 20 to 30 minutes and minimizing distractions during mealtimes), and address goals such as increasing the volume and/or variety of foods a child will eat.

The Pediatric Feeding and Swallowing Center at Children’s Hospital of Philadelphia has a full array of services to help children with a variety of feeding problems. Nonlocal families can ask your child’s current care team and therapy providers to recommended feeding providers in your area.