Urea Cycle Disorder Management

The dietary goal of managing a UCD is to control the amount of ammonia that is produced as the body breaks down protein. One way to produce less ammonia is to eat less protein. When living with a UCD, it's important to understand your protein limitations, especially since the right amount of protein is different for everyone. Limiting it too much may cause your body harm, too, because we need protein to grow and for other bodily functions. A dietitian will help you manage your low-protein diet. He or she will help you make a plan that works for your personal needs and restrictions.

Before making changes to your diet, you should speak with a dietitian to decide the right foods and portion sizes for you. A dietitian can help plan low-protein meals that meet your or your child's needs, and change them as your child grows. For recipes to help balance your daily protein needs and make it easier to prepare meals, sign up for our free low-protein cookbook.

Your care team will work to develop a customized treatment plan that's right for you or your child. This can include:

People with urea cycle disorders (UCDs) usually work with a healthcare team that has several members. You may see a primary care doctor as well as a team of specialists at a metabolic center. These specialists may include a metabolic geneticist, a dietitian, nurses, a genetic counselor, a nurse practitioner, and a social worker.

Metabolic geneticists are specialists who treat disorders like UCDs. The metabolic geneticist, or one of his or her team members, will do ammonia level tests, create a UCD management plan, and make any changes to treatment. Your metabolic geneticist will help coordinate with other specialists, and can be the main point of contact for your primary care doctor. Your care team will also help with things like understanding genetics, UCDs, and family planning.