1. [NAME] and [His/Her] UCD
Learn About [NAME], UCDs, and How You Can Help at School
[Name of the school you’re presenting to (eg Smithtown Elementary School)] [Date of presentation]

2. Getting to know [NAME] Age
Likes/favorites (color, movie, TV show, book, etc)
Things he or she likes doing
Fun facts
Special things about him/her

4. What is a urea cycle disorder (UCD)?
A urea cycle disorder, or UCD, is a condition that prevents the body from processing protein correctly. In someone with a UCD, protein in the body gets broken down into ammonia, but the liver can’t turn ammonia into urea to get rid of it safely. Instead of being removed from the body, ammonia builds up in the blood, which can be very dangerous and cause damage throughout the body
UCDs are rare and only affect about 1 in every 35,000 people born in the United States
UCDs are genetic. A UCD is something a child is born with and will have for his or her whole life. It can’t be outgrown
People with UCDs don’t look sick all the time, so it can be hard to remember that they’re at risk for a medical emergency

5. Risks of a UCD
People with UCDs are at risk for something called a hyperammonemic crisis (sometimes referred to as an “HAC” or a “crisis”). This is when the amount of ammonia in their blood becomes extremely high. This is a serious medical emergency because it can cause brain damage, coma, or even death. If [NAME] is having a crisis, [he/she] needs medical attention right away
Sometimes the amount of ammonia in [NAME]’s blood starts to go up, but it doesn’t go high enough to cause a crisis. This is called hyperammonemia, which means elevated levels of ammonia in the blood. This can lead to a hyperammonemic crisis. It can also be dangerous because it can be harmful to the brain and body. It’s important to recognize and address the symptoms of hyperammonemia right away

6. [NAME]’s UCD symptoms
The symptoms of elevated ammonia that [NAME] might have on a daily basis are:
[Symptom, ie feeling very tired]
[Symptom, ie lack of appetite]
[Symptom, ie headaches]
It’s important to watch for these symptoms and to address them if they start happening.
If these symptoms become serious, that could mean [he/she] is going into a hyperammonemic crisis. If this happens, it’s important that [he/she] gets medical attention right away

7. What if [NAME] has a hyperammonemic crisis?
We have an emergency medical protocol for when [NAME] shows signs of a hyperammonemic crisis. I’m handing out a copy of this protocol and an instruction sheet so we can go over them together
The most important things to know are:
[Insert major points/instructions from medical protocol]

8. What does having a UCD mean for [NAME]?
[NAME] has to be on a low-protein diet all the time
[He/she] also takes supplements to help [him/her] get the vitamins and nutrients that are missing from a diet low in protein
[He/she] also takes a medicine every day that helps remove ammonia from [his/her] body

9. What does having a UCD mean for [NAME]?
[He/she] also has to avoid things that might trigger ammonia levels in [his/her] body to rise, which could lead to a crisis
Some ammonia triggers are:
Eating too much protein
Being dehydrated
Doing strenuous activity
Being stressed or overwhelmed
Being too hot or too cold
Being otherwise sick, like with a cold or the flu

10. Daily support [NAME] needs at school
[Fill in notes about diet/mealtime, physical limitations, taking supplements and medicine, and any other important information]

11. Daily support [NAME] needs at school (continued)
[If child has an IEP or 504 plan, insert information about services and/or accommodations]

12. What you can do to help
These are the things you can do to help [NAME] stay safe and healthy
[Insert additional support that can be offered, like ideas for classroom celebrations]
[Insert suggestions for classmates, like encouraging other children to be inclusive and supportive]
[Insert suggestions about support needed from other staff, like the school nurse, cafeteria monitors, and gym teacher]
[Insert suggestions about cold and flu season or any time there is an illness going around the classroom or school]

13. Substitute teachers
We have a resource sheet that is specifically for substitute teachers. It gives an overview of UCDs, dos and don’ts, and the support [NAME] needs. We are happy to be a resource at any time for substitute teachers who have questions or concerns.

14. Support [NAME] needs during a crisis or illness
Because of his/her UCD, [NAME] may need to miss school for long periods of time to have treatment and/or recover
These things would be helpful during or after an illness:
[Insert specific instructions during illness, like sending homework home, weekly calls with parents, or sharing updates with classmates]
[Insert specific instructions after illness, like preparing classmates for return, paying close attention to symptoms, or keeping up with any instructions from doctor]

15. Questions?
Please know you can contact us at any time with questions or concerns. We are very grateful to all of you for helping us keep [NAME] safe and healthy at school!
[Insert name and contact information]

16. Thank you! UCD in Common is a trademark of Horizon.
©2019 Horizon Pharma. DA-UNBR-00867