Living with urea cycle disorder.

There is no cure for urea cycle disorder (UCD), but there are important things you can do to help keep your ammonia amounts at a safe level. Ammonia is very harmful, especially to the brain. High levels of ammonia can cause damage to brain cells. The more often levels get high, the more likely the damage will be permanent. 

UCD is an unpredictable disease. Ammonia levels go up and down throughout the day. They can go too high if you eat too much protein, get sick, get too hot or have a lot of stress. By following a careful diet and keeping other healthy lifestyle habits, you can help keep your UCD in control. If your doctor prescribed medications to help keep your ammonia levels lower, make sure you take them as directed. 

Tips for staying healthy

• Limit protein in your diet. It’s best to work with a dietitian to learn what foods are safe and what foods have too much protein. You can also get ideas and recipes from support groups to help you eat a balanced diet. 
• Take special amino acid supplements if instructed. These supplements give your body the protein it needs in a form that is already broken down.
• Stay out of the heat, don’t exercise too hard and stay hydrated. High temperatures can make ammonia levels go up.
• Stay away from people who are sick.
• Wash your hands often.
• Keep up with your vaccinations.
• Get plenty of rest.
• Keep your doctor appointments.
• Try to manage stress as best as possible. Find ways that work for you. Here are some tips to help:
  • Take slow, deep breaths, go for a walk or listen to music or other calming sounds.
  • Work on a project, like gardening, crafts and knitting.
  • Practice yoga, tai chi or meditation.
  • Use essential oils if they don’t irritate the skin.
  • Avoid stressful situations

Signs that your ammonia may be going up

Signs of high level varies from person to person.  Some common symptoms include:

• Feeling very tired
• Not feeling hungry
• Headache
• Trouble concentrating or making decisions
• Forgetfulness
• Confusion
• Mood swings
• Seeing things that aren’t there (hallucinations)
• Seizures

If you need to go to the emergency room

Sometimes your ammonia level starts to go up with little warning. It is a good idea to have a bag packed in case you need to go to the emergency room. It can also be helpful to call them before you get there. If they know you are coming, they can be ready for you. They’ll draw your blood and start treating you quickly. Some people have a letter from their doctor that explains their UCD and what to do in case of emergency. It is a good idea to always have it with you.

Know your body

Everyone experiences their UCD in their own way. You know yourself the best. If you need to go to the emergency room, for example, you should be able to tell the team:

• What “normal” ammonia levels are for you.
• How you manage your ammonia levels every day.
• Signs that your ammonia may be getting too high.

For more support and information, reach out to your CVS Specialty CareTeam.