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Medical / Dietary Needs

What you need to know

Treatment of UCDs usually involves finding the right balance of dietary protein intake- enough so that the individual has the protein building blocks necessary for their cells to grow and develop, but not so much that it overwhelms the broken urea cycle.

  • They may need to eat a special diet and some may need the help of a feeding tube to make sure they get the nutrition they need.
  • There are also medications that can help keep ammonia levels low.
  • Further, because illness can cause stress on the metabolic system, they need to avoid being exposed to people who are sick, and if they get sick they need to take extra precautions.
  • Some children with UCDs have had or may be recommended to have a liver transplant.
  • These children often no longer need to follow a special diet, but may be on medications for their transplant.

Not every child with a UCD requires treatment. 

Be aware, or ask a parent, if the child has a medical alert bracelet.

What you can do

Teachers of students with UCDs find that parents are an excellent resource when it comes to understanding the child’s treatment.

  • Ask parents if their child is on any medications, and consult with the nurse and parents about how medications should be administered at school.
  • Ask the parents if the student has any dietary restrictions and how they would like to manage school meals.
  • If the student uses a feeding tube, ask the student’s parents, the student and the school nurse to tell you more about what it’s like to use a feeding tube.
  • Ask parents if and how they’d like to be notified about student illnesses.

If your student is not on any treatment, ask parents how you can help make sure the child stays healthy