When to call a Doctor
Infants, children and adults with a known urea cycle disorder should be under the routine care of a physician knowledgeable in the diagnosis and management of these diseases.
Parents of infants and young children are often the most skilled at recognizing subtle changes that are symptomatic of rising blood ammonia levels in their children.
In infants and young children vomiting, refusal to feed, listlessness, lethargy and irritability are often symptoms of rising ammonia levels. If these symptoms persist over several hours, the physician should be contacted for direction on managing the child’s care. Infants and children who are difficult to rouse, stuporous or in a coma should be transported to the emergency room immediately.
Many physicians have routine suggestions for “sick day management” that parents can follow upon early recognition of illness in their children. Discuss these steps with your child’s physician and have appropriate medication, fluids and foods on hand.
Older children and adults may or may not recognize subtle signs of rising ammonia levels in themselves. Parents, spouses, and caregivers are often the best observers of subtle changes in behavior such as hallucinations, sleep disorders, delusions, etc. that indicate rising ammonia levels. Episodes of vomiting frequently occur with rising ammonia levels.
“Sick day management policies” should be discussed with the physician and appropriate medication, fluids and foods should be on hand. Older children and adults who are difficult to rouse, stuporous or in a coma should be transported to the emergency department immediately.