Tips for Staying Well When You Have a Urea Cycle Disorder
Staying Safe During Cold and Flu Season
When the cold weather moves in, so does cold and flu season. For people living with a UCD, it’s important to keep the body from being weakened by viruses and germs that are common during cold and flu season and can cause ammonia levels to rise. Getting sick may trigger ammonia levels to start rising to toxic levels. As 1 mother of a daughter living with a UCD shares, "When November rolls around, we’re on high alert for her classmates coughing and sniffling because a simple cold could turn into something dangerous for her."
Here are some tips for cold and flu season:
Get vaccinated: Influenza, or the flu, is a serious and potentially deadly disease, especially for someone with a UCD. A seasonal flu shot can help protect the body from the virus. Encouraging all members of the family to get a flu shot can lower the chances of spreading the virus. You should talk with your doctor before getting a vaccine.
Stay hydrated: It’s important to stay hydrated when cold or flu symptoms hit, especially if they include fever or vomiting. Drinking plenty of fluids, including water or Gatorade®, can help replace those lost fluids and can help ease a stuffy nose.
Managing a Sick Day and a UCD
Start with prevention
Ask friends, family members, and classmates or coworkers to stay away when they’re sick.
As a family, stay away from group events during cold and flu season so you have less contact with germs. This might mean you have to skip social events or even work or school when other people are sick.
When you start to feel sick
- As a caregiver, tell your child’s school staff about his or her UCD. Explain that they might be absent more than usual and may be absent for long periods of time. You should also take notes every time your child misses school. This will help you avoid problems with truancy laws.
- As an adult, tell your supervisor at work about your UCD. Make sure to explain that UCDs can be unpredictable, and you may need to miss work without a lot of warning. You might need to bring a letter from your doctor to make sure you get all the time off that you need.
When sickness hits
You might need to lower the amount of protein you’re eating. Talk to your doctor about how much protein to eat when you’re sick. You can ask your doctor to help you create a sick day protocol.
What to Bring to the Emergency Room
Living with a UCD can sometimes mean unexpected trips to the emergency room. These trips can be frustrating if hospital staff are unfamiliar with UCDs, especially during a crisis when certain tests and treatments need to happen quickly. Having a medical protocol letter to share with hospital staff can save time and help you get what you need. Work closely with your doctor to be sure that your letter contains all the important information unique to you and how you manage your UCD.
UCDs are rare enough that many emergency department staff members don’t know how to handle the unique needs of a patient having a hyperammonemic crisis. To help the staff, and to ensure you get the treatment you need, make sure the information below is always with you in a medical protocol letter. Also, keep a brief version of the letter on a tag in a purse, backpack, emergency go bag, or desk at work.
About you
- Doctor’s name and pager or cell number
- Emergency contact’s name and cell number
Specific details about how you manage ammonia levels day to day so doctors can tailor care to your personal needs
About urea cycle disorders (UCDs)
Brief information about UCDs, including the fact that an untreated or undertreated hyperammonemic crisis or elevated ammonia levels over time may cause serious health risks, including coma or even death. Download the UCD Fact Sheet to help with this
How staff can help
- Do not wait for ammonia-level testing while the attending healthcare provider is determining an overall treatment plan.
- Follow these strict testing guidelines to get an accurate result:
- Do not use a tourniquet when collecting the blood sample.
- Place blood on ice immediately after drawing.
- Process blood within 20 minutes of the draw.
- Give fluids as ordered by your doctor in your medical protocol letter.
- Be cautious of specific medicines.
What Items Are in Your Go Bag?
If you or someone you care for has a UCD, you know that ammonia levels can be unpredictable. Ammonia can sometimes reach high levels with little warning. Many families keep a go bag packed with essential items to help them get out the door quickly in case a trip to the emergency room is necessary.
Use this guide to help you decide what to pack in your own go bag
Remember: Tell people around you about your go bag. Coworkers, teachers, friends, family members, daycare providers—all of them—need to know where to find the bag and what to do with the contents.
