UCDs and children

Taking care of children diagnosed with urea cycle disorders

Are you a parent or caregiver of a child with a urea cycle disorder (UCD)? If so, you know the day-to-day challenges that come with managing a UCD and how it impacts your child’s and your family’s quality of life, as well as your child’s mental and emotional development. Taking care of a child with this condition can be draining and emotionally stressful, and the possible risk of damaging symptoms can cause constant fear and worry. Unfortunately, children with UCDs are at high risk of:

  • Learning disabilities
  • Attention disorders
  • Brain damage
Child icon showing risks associated with pediatric UCDs
  • Lower quality of life
  • Social development issues
  • Delay in brain
    and learning development

It’s important to pay attention to any symptoms that may suggest even a mild increase in ammonia levels, as they can lead to brain damage. Monitoring ammonia levels and avoiding ammonia elevations are crucial to help avoid the dangerous issues mentioned above. The constant concern about how UCDs get in the way of living a normal life can be overwhelming, but you are not alone. Explore these helpful UCD resources.>

If you or a loved one is experiencing symptoms or needs help managing a UCD, talk to a doctor as soon as possible.

It’s important to pay attention to any symptom that may suggest even a mild increase in ammonia levels.

It’s important to pay attention to any symptom that may suggest even a mild increase in ammonia levels.

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Sources

  1. Gerstein MT, Markus AR, Gianattasio KZ, et al. Choosing between medical management and liver transplant in urea cycle disorders: a conceptual framework for parental treatment decision-making in rare disease. J Inherit Metab Dis. 2020;43(3):438-458.
  2. Batshaw ML, Tuchman M, Summar M, Seminara J, Members of the Urea Cycle Disorders Consortium. A longitudinal study of urea cycle disorders. Mol Genet Metab. 2014;113(1-2):127-130.
  3. Häberle J, Burlina A, Chakrapani A, et al. Suggested guidelines for the diagnosis and management of urea cycle disorders: first revision. J Inherit Metab Dis. 2019;42(6):1192-1230.
  4. Enns GM, Porter MH, Francis-Sedlak M, Burdett A, Vockley J. Perspectives on urea cycle disorder management: results of a clinician survey. Mol Genet Metab. 2019;128(1-2):102-108.
  5. Gropman AL, Prust M, Breeden A, Fricke S, VanMeter J. Urea cycle defects and hyperammonemia: effects on functional imaging. Metab Brain Dis. 2013;28(2):269-275.