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Nutrition in (risk of) hypothalamic obesity

At the Princess Máxima Center, we regularly see children with hypothalamic obesity or at risk of hypothalamic obesity as a result of a brain tumor. Damage to the hypothalamus may occur due to pressure from the tumor or as a result of surgery or radiation therapy to the tumor or the surrounding area.

Impact of hypothalamic dysfunction on nutrition

Hypothalamic dysfunction causes many problems that have a major impact on the child and family. In terms of nutrition, it leads to impaired satiety, resulting in increased appetite and a strong focus on food. Patients often have lower energy needs, excess insulin production, which makes the body store fat more easily, and reduced energy levels, making them less physically active. They may also experience problems with sleep, vision, and temperature regulation.

Weight gain during and after treatment

Some children already have overweight and increased appetite at diagnosis, while others develop these symptoms only after surgery or radiation therapy. When a child with a brain tumor in the hypothalamic region is admitted for surgery and there is suspicion of hypothalamic dysfunction, literature shows that the risk of weight gain is highest in the first three months after the procedure.

Role of the dietitian during admission

At admission, the dietitian is involved immediately. During this introductory consultation, parents and the child are informed about the risk of rapid weight gain. Initial nutrition advice is provided, based on the Dutch Healthy Diet Guidelines for the child’s age and sex. This advice focuses on energy-restricted choices and reducing carbohydrates, especially fast sugars, as there are indications that these can contribute to more rapid weight gain.

Follow-up care after discharge

In the period after discharge from the hospital, follow-up consultations by phone are scheduled when needed to evaluate and adjust the nutrition advice. It may be preferable for this guidance to take place closer to home, provided by a primary care (pediatric) dietitian.

About three months after surgery, children return for a multidisciplinary outpatient visit. During one morning, they see an exercise physiologist, physical therapist, and dietitian. Resting metabolic rate is measured and physical activity advice is provided. A reduced resting metabolic rate is often found, sometimes by as much as 40%.

During the appointment with the dietitian, weight development and adherence to the advice are reviewed. If necessary, the advice is adjusted based on the resting metabolic rate measurement, which often results in a stricter diet with lower energy and carbohydrate intake.

Intensive dietetic support

Following a strict diet places a heavy burden on the child and family. For this reason, intensive support from a dietitian is often required. The dietitian at the Princess Máxima Center can then transfer care to a primary care dietitian closer to home.