The Role of a Dietitian on a UCD Care Team

Dietitians play a vital role in UCD care, carefully balancing nutrition to support growth and health. They work closely with the medical team, monitor diets, and provide ongoing guidance to patients and families.

A dietitian plays a very important role in the team that takes care of UCD patients.

The dietitian calculates very carefully the intake of foods of the patients to make sure that we are meeting nutrients, we're meeting calories and protein is within desirable range to grow and develop properly.

We see patients together with the entire team of doctors and nurses and genetic counselors.

We usually see patients every 6 months, depending on the keys could be a little more frequent.

When the patients come in, we often ask them to bring a diet record.

3 days is ideal and we ask them to be as specific as possible how much they are eating and what times liquids that they drink throughout a typical day.

We ask 2 weekdays, maybe one weekend day to have a variation of what actually happened.

The dietician works really closely with the metabolic doctor.

We will analyse the diet and compare with the blood work to make determinations of diet changes or medication changes of what would be ideal to bring the best outcome for the patient.

If the patients are taking some kind of medication, vitamins, we would ask them to bring in with them so we know the dosage and how often they are taking it.

They can also bring questions or pictures of food labels and will help them.

After we see patients in clinic, we keep close contact with them to make sure they are following diets appropriately and if they have any questions that they could have it answered between visits.

Working with patients with urea cycle disorders, it gave me the opportunity to really get involved.

We get really close to the patients and the families and we feel like we are part of the family and that's what makes it a special.