[Name] and [his/her] UCD How to use this

slide1. [Name] and [his/her] UCD<br>
slide2. How to use this presentation The customizable presentation lets you provide a personalized presentation of your child and their UCD to the school. You can add photos of your child, list their favorite movies and books, add fun facts, and more to help you educate teachers and school staff about your child and his or her UCD. Fill in anything that appears in [brackets], or delete it if it doesn’t apply to your child
Feel free to customize the presentation as much or as little as needed to fit with your unique situation
This presentation references the following resources that can be shared with your school. Fill them out and bring them to the meeting:
Emergency protocol worksheet
Substitute teacher presentation<br>
slide3. [Name] and [his/her] urea cycle disorder (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]<br>
slide4. 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]<br>
slide5. What is a UCD? A urea cycle disorder (UCD) is a genetic disorder. A UCD can’t be outgrown and you can’t catch it from someone else. 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. About 1 in 35,000 people born in the United States are affected. It is something [Name] was born with and will have for life.<br>
slide6. UCDs are caused by a break in the urea cycle When we eat protein, our bodies break it down into smaller parts
A waste product called ammonia is created
The liver helps our bodies change that ammonia into urea, which we get rid of naturally through urine
This process all happens in the urea cycle Someone with a UCD is not able to properly get rid of ammonia
Instead of being removed from the body, ammonia builds up in the blood, which can be very dangerous and cause damage throughout the body<br>
slide7. Risks of a UCD Due to [Name]’s UCD, the amount of ammonia in their blood starts to go up, or hyperammonemia occurs, which means elevated levels of ammonia in the blood. This can lead to a hyperammonemic crisis. 
A hyperammonemic crisis (sometimes referred to as an “HAC” or a “crisis”) is when the amount of ammonia in their blood becomes extremely high. This is a serious medical emergency because it can cause brain changes, coma, or even death. It’s important to recognize and address the symptoms of hyperammonemia immediately. IF [NAME] IS HAVING A CRISIS, [HE/SHE] NEEDS MEDICAL ATTENTION RIGHT AWAY.<br>
slide8. [Name]’s UCD symptoms The symptoms of elevated ammonia that [Name] might have on a daily basis are:
[Feeling tired or sluggish, staring or "zoning out", nausea of vomiting, Losing touch with reality/hallucinating, unusually irritable or uncooperative, aggression, lack of appetite, slurring words, headache]
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. IF YOU BEGIN TO NOTICE [NAME] HAVING SYMPTOMS, DON’T WAIT TO ADDRESS THEM!
ANY DELAY COULD BE DANGEROUS FOR [NAME].<br>
slide9. What if [Name] has a hyperammonemic crisis? The most important things to know are:
[As soon as [Name] begins to show symptoms, we should be notified immediately]
[Once we are notified, we alert the clinic as soon as something is wrong so they can prepare for us to come in]
[We have an emergency letter to give to emergency room staff if they are unfamiliar with UCDs] 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.<br>
slide10. What does having a UCD mean for [Name]? [Name] has to be on a low-protein diet all the times. [Include any additional care requirements here] [He/she] also takes supplements. These supplements can fill the gap for the nutrients [he/she] would normally get from having more protein from their diet. [He/she] also takes a medicine every day that helps remove ammonia from [his/her] body.<br>
slide11. 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. Being stressed or overwhelmed
Being too hot or too cold
Being otherwise sick, like with a cold or the flu
[Add any additional triggers here] Some ammonia triggers are:
Eating too much protein
Being dehydrated
Doing strenuous activity
[Add any additional triggers here]<br>
slide12. Daily support [Name] needs at school [Fill in notes about diet/mealtime, physical limitations, taking supplements and medicine, and any other important information]<br>
slide13. Daily support [Name] needs at school (continued) [If child has an IEP or 504 plan, insert information about services and/or accommodations]<br>
slide14. What you can do to help [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] These are the things you can do to help [Name] stay safe and healthy.<br>
slide15. Substitute teachers We have a resource sheet that is specifically for substitute teachers. It gives an overview of UCDs, do’s 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.<br>
slide16. Support [Name] needs during a crisis or illness 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] Because of his/her UCD, [Name] may need to miss school for long periods of time to have treatment and/or recover.<br>
slide17. Questions? [Insert name and contact information]
[Insert name and contact information] 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!<br>
slide18. THANKYOU! © 2024 Amgen Inc. All rights reserved. DA-UNBR-US-02856 08/24<br>