Urea cycle disorder (UCD) is an unpredictable disease. Ammonia levels can get high if you eat too much protein, get sick, get too hot or have a lot of stress. High ammonia levels, even if you don’t have symptoms, can lead to brain damage. So, it’s very important to track how you feel.
Some common signs and symptoms of high ammonia levels are:
- Loss of appetite
- Poor feeding in babies
- Tiredness (fatigue)
- Lack of energy or feeling sluggish (lethargy)
- Trouble concentrating
- Forgetting things
- Irritability and mood swings
- Slurring of your words
- Feeling wobbly or unsteady
As ammonia levels go up, you may also:
- See things that aren’t there
- Believe things that aren’t true
- Have seizures
- Go into a coma
Always call your UCD care team or go to the emergency room if you feel that your ammonia levels might be going up.
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 like to have a letter from their doctor explaining UCD and what to do in case of emergency. It’s a good idea to always have it with you.