Sharing a Child’s Diagnosis

In general

• An explanation of what a UCD is
• Details about how you manage your child’s UCD, including diet, medication, and activity
• Signs of elevated ammonia levels or a hyperammonemic crisis
• What to do if your child shows signs of elevated ammonia levels or a hyperammonemic crisis
  • When sharing this information, you may want to tailor instructions to how familiar you are with the person receiving the information and how much they know about your child’s UCD (for example, you may give more information to close friends and family than you do to your child’s teachers)
• Where to find your child’s emergency go bag. For tips on what to include in the
  go bag, click here

At the doctor’s office

• Share all information, including any times you have had to manage elevated ammonia levels at home and any emergency department visits, with both your child’s specialist(s) and primary care doctor
• Make sure each doctor has your child’s:
  • Medical protocol letter
  • Medication list
  • Healthcare proxy information

When traveling

When you’re away from home, stay prepared for anything that might come up by making sure you bring the things you need and knowing where the nearest hospital is. Explore other tips like these that can help you prepare for travel and make the trip enjoyable for everyone.

What to share at school

Children with a UCD can face particular challenges at school. These tips can help you prepare your child’s teachers, school staff, coaches and peers so they know what to expect.