Your child’s urea cycle disorder (UCD), like any medical condition, can be a private thing. But it’s important to share some basic information with friends, family, school staff, and your child’s caregivers. Make sure you explain what a UCD is and what kind of help you and your child might need in an emergency. Here are some tips about what information might be helpful for others to know. You can use it to help you decide what to share with whom.
What to Share
In general
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An explanation of what a UCD is
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Details about how you manage your child’s UCD, including diet, medication, and activity
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Signs of elevated ammonia levels or a hyperammonemic crisis
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What to do if your child shows signs of an elevated ammonia level or hyperammonemic crisis
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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).
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Where to find your child’s emergency go bag. For tips on what to include in the
go bag, click here.
Download the Caring for Someone With a UCD Guide.
You can give this guide to family, friends, and teachers to help them better understand UCDs and what to watch for.
At the doctor’s office
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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.
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Make sure each doctor has your child’s:
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Medical protocol letter
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Medication list
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Healthcare proxy information
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When travelling
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.