What are some of the problems that can occur?
Effects on the heart
Like all other organs of the body, the heart muscle and the lining around it (called the pericardial sac) can become inflamed and sore. The inflammation caused by Kawasaki Disease can affect the small arteries to the heart – the coronary arteries. Instead of being narrow and straight, the coronary arteries might be enlarged from inflammation or ‘ballooning’ in the artery which , is called an aneurysm. One in four children affected by Kawasaki Disease develop coronary artery aneurysms. Blood moves much slower in an aneurysm (which is a wider space) and slow moving blood may cause a clot. Although this is a relatively uncommon problem, it is serious and this is one of the reasons why doctors look carefully for coronary artery aneurysms. In a small proportion of the children affected in this way, they can become seriously ill and the heart can function less well.
In order to detect the heart problems (or hopefully confirm these are not present), an echocardiogram (heart ultrasound scan) is performed. This is quite specialised and may be undertaken at a children’s hospital or may be undertaken at your local hospital by a specially trained doctor. The scan will detect any change of heart function, inflammation of the lining of the heart, inflammation of the valves or development of artery dilation (widening) – or aneurysm formation. The scan is usually performed soon after the diagnosis and at least three times during the course of the illness and the convalescent period. Sometimes the results of the echocardiogram will be one of the factors which allow the doctor to confirm a Kawasaki Disease diagnosis.
In order to obtain good pictures it is necessary for your child to lie quiet and still. Everyone who knows about Kawasaki Disease knows how unhappy the unwell children often are, there is no need to be embarrassed if your child will not co-operate, the staff will be used to it! Sometimes it is necessary to sedate a child to get the best possible examination of their heart – and staff will discuss this with you if it is required.
Don’t be worried if the echo seems to take ages to perform, the technician or doctor is trying to see the tiny arteries that feed the heart. As the heart is just the size of your child’s clenched fist, finding and carefully checking their hearts can take a while.
If a widening of the artery or an aneurysm is found during an echo examination, it might be helpful to know that the majority of these changes are reversed over the following two years. This does depend on the nature of any damage caused to a child’s heart by Kawasaki Disease, and of course how extensive the damage is initially. But it is important to say that even for those children who do go on to have a long-term problem, whilst they will have to take medication and be monitored closely, most lead a normal life.
It can be devastating to find out there is something wrong with your child’s heart and it will take time to adjust to the situation.
Irritability and mood changes
Most children with Kawasaki Disease are very agitated and irritable during the acute stage of the illness. They may be very unsettled and want constant attention. They often sleep badly at night and may be inconsolable. During the convalescent stage this gradually improves for most children, but it may take some months before your child returns to their normal behavior patterns.
For some children, difficult behaviour can become a long-term problem. Research which the Support Group helped with show that between 30 and 40% of children experience some behavioural changes. This might seem like a high proportion but it’s important to note that nearly all of these changes have been shown to settle down within two years.
If other mental health issues emerge, these are probably not linked to Kawasaki Disease and a doctor should be consulted.
Abdominal pain and loss of appetite
Many children do not wish to eat or drink while they are acutely unwell during the early stages of Kawasaki Disease. It is particularly important to encourage your child to drink when they are in hospital to avoid dehydration.
Many children complain of tummy pain and possibly have vomiting and/or diarrhoea when ﬁrst ill with Kawasaki Disease – this doesn’t usually last long. Ongoing tummy pain could however be linked to other issues, for instance it can sometimes be caused by some types of medicines. Speak to your doctor if this is a concern.
Nearly half of children affected by Kawasaki Disease have some initial issues with joint pain or swelling in the ﬁrst few weeks. Areas most affected include large joints – elbows, knees or ankles. This can be quite painful but over the counter children’s painkillers can be given to help (ibuprofen should be avoided in children who are already taking aspirin.) Very occasionally joint pain can continue for longer – if this happens, discuss it with your doctor.
Dry lips and fingertip peeling
These are common symptoms of Kawasaki Disease. Dry lips which are red and cracked are an early symptom of the disease, whilst skin peeling from the hands and sometimes the soles of the feet/toes too may happen 10 – 21 days after your child first became unwell. Skin peeling only happens in around half of the children affected by Kawasaki Disease and the absence of skin peeling should never be used as a reason to dismiss a possible diagnosis of Kawasaki Disease.
Dry lips can be treated with Vaseline if needed – this does help. Creams or emollients (such E45) can be used on dry, peeling skin if it is uncomfortable. Whatever cream you choose to use, it is important that it does not contain antibiotics or perfume as these ingredients can irritate the skin more. It is also important to discourage the children from picking the skin as this could possibly lead to more soreness or infection.
Only a few cases have been described where the kidneys also became inflamed and sore, leading to a small amount of blood or protein leaking into the urine in children. This is not known to cause significant long-term damage in the kidneys. Though the inflammation caused by Kawasaki Disease can rarely affect the kidneys – because these organs grow as your child grows, any damage will most likely recover rapidly. Routine blood tests taken for Kawasaki Disease will look at the functioning of your child’s kidneys and any problems which have occurred should be spotted early – and can be addressed.
Gall bladder, gallstones and jaundice
A small proportion of children with Kawasaki Disease will develop gallstones and a dilated gall bladder. This can lead to a slight yellowing of the skin and can also involve slight inflammation of the liver (hepatitis). These symptoms usually resolve and don’t typically cause significant complications. Dilation, or thickening of the wall of the gall bladder can be easily detected by an ultrasound scan.