Part of living with a urea cycle disorder (UCD) is being prepared for things that come up and can make managing your UCD more difficult like colds or the flu. UCDs require careful management of diet, fluids, and temperature, all of which can be affected by sickness. Whether you’re living with a UCD, or caring for someone who has one, you know how unpredictable the disease can be. Here are some ways to be prepared and to reduce your chances of having more complicated health problems.
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 one 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:
Stay home: Whether it’s a co-worker sneezing or a stomach bug that’s running through the classroom, stay away from others who are sick by staying home. Work from home or call for school assignments so nothing is missed, except for the chance of getting sick.
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. For more information about getting vaccinated against the flu, visit the Centers for Disease Control and Prevention.
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.
Wash hands: This is the easiest way to keep germs away. Teaching children early to wash hands after class activities, using the bathroom, and sneezing or coughing cuts down on spreading germs and helps keep everyone from getting sick. Start promoting hand washing with these 5 simple steps: 1. Wet. 2. Lather. 3. Scrub. 4. Rinse. 5. Dry.
For most people, the common cold is no big deal. But for someone with a UCD, even a minor illness can turn into a major problem. Below are tips to help you or your loved one manage a sick day and a UCD. Remember that these are only suggestions and make sure to let your doctor or nurse know if you start feeling sick. And talk to your doctor about creating a sick day plan that is tailored to you.
Start with prevention
Drink plenty of water and sports drinks (like smartwater® or Gatorade®) to stay hydrated
Wash your hands often
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
Go to bed early, and get plenty of rest
Tell family members how you’re feeling so they can help. If you’re feeling worse, speak up! Kids might be scared of having to go to the hospital, but it’s important to know how they feel
Stay home from school or work
As a caregiver, tell your child’s school staff about his or her UCD. Explain that he or she 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
Rest, but have a family member check on you
In a notebook, write down (or have a family member write down) everything that goes into your body and everything that comes out
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
Make sure you’re getting enough calories. Eat or drink lots of ice pops, candy, sports drinks, and other sugary things
Be prepared in case your ammonia levels go up and you have to go to the emergency room. Pack a go bag, and make sure your medical information is in it
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.
Important 24-hour contacts
Doctor’s name and pager or cell number
Emergency contact’s name and cell number
What “normal” ammonia levels are for you
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 Facts Sheet to help with this.
Signs that you may be experiencing a hyperammonemic crisis (make sure these are specific to you, as signs of a crisis are different)
What tests should be done while in the hospital
How to ensure accurate ammonia readings
How staff can help
Keep you free of germs. This may require being separated from others who are sick
Test blood immediately
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
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.