BEWARE OF THE SYMPTOMS OF A UCD
Ammonia levels are different for every person living with a UCD, symptoms can be vague and might be different depending on your age. Even if your ammonia levels only go up by a small amount, you might start to feel poorly and experience symptoms.
If your ammonia levels become very high, you might experience something called ‘hyperammonaemia’. This can be very dangerous, and it’s important that you and your family know what to do if you or they think that you might be experiencing this.
SYMPTOMS VARY AND MIGHT PRESENT AT DIFFERENT AGES
An infant with a UCD can become very ill during its first week after birth, since it can no longer depend on the mother’s placenta in terms of feeding.
When the baby is weaned and starts eating regular food, the amount of protein can surpass the capability of the urea cycle. If a baby suffers from this, symptoms like rapid breathing, vomiting and drowsiness may be present. This might require hospital care, in order to reduce the levels of ammonia in the blood and help the baby with breathing.
A child with a UCD risks becoming severely sick. It may be that the child has had a childhood with no health issues, prior to becoming sick with a UCD. The onset of the UCD symptoms can be caused by an infection, for example a cold. It can also be induced by a period of protein rich diet, e.g. eating more protein than normal when at a party, going on holiday or taking a trip.
Teenagers may suffer from chronic episodes of vomiting and drowsiness. Hospital care might be needed, where extra fluids are given – often via infusion drip. If an admittance happens more than once, the doctor’s suspicion usually awakens and a possible UCD might be investigated.
Below we have attached a link to a communication tool that you can use in conversations with your healthcare professional.