We received a question about a person with Down syndrome who was refusing to eat solids. He was found to have dental disease. He needed several fillings and had a couple baby teeth removed. The dentist stated the problems were "minor" and should not have caused the issue.
In our experience, we have seen several adults and adolescents with Down syndrome who had this issue. They either stopped eating altogether or stopped eating solid foods. We found only relatively "minor" physical health problems. Examples of these problems have included dental disease, gastritis (inflammation of the stomach), and a choking episode. Our sense was that the relatively "minor" physical health problems triggered a compulsive fear or aversion to eating or eating solid foods. Even after the physical health problem had gotten better, the compulsive fear or aversion to eating persisted. It took time for the person to "re-learn" that it was "safe" to eat.
Treating the underlying physical problem is a key feature in addressing the problem. Some of the additional steps that have helped include:
- Swallowing therapy with a speech therapist
- Giving the individual liquid nutritional supplements until they are eating solids again
- Using peer encouragement
- Reducing anxiety using sensory strategies
- Treating obsessive compulsive disorder and/or anxiety using medication
If you can't find a speech therapist who works with someone with Down syndrome, consider reaching out to a speech therapist who works with people who have had a stroke. These therapists often work with individuals to "upgrade" their diet. For example, they might work on upgrading from pureed to mechanical soft. They might work on moving from honey thick liquids to nectar thick liquids. Alternatively, a counselor can work with individuals to desensitize them to fearful things.
A key to treatment is to go "safely." We should not push the person beyond their sense of safety by reintroducing foods too quickly. It is important to move forward with treatment slowly so that the person does not become frightened or fearful again. Gently encourage but try not to go too far, too fast. That can cause the person to end up going backwards instead of making progress.
In addition, in our opinion, "minor" is in the eye of the beholder (or, in this case, in the mouth of the beholder). The severity of the physical problem may seem not to match the individual's response. Some individuals diagnosed with a "minor" physical problem may develop very significant eating problems. Some individuals with very significant physical problems may develop no or mild eating problems.