Q & A
Below are questions we are frequently asked – and we hope you find the answers helpful. If you’re familiar with the Societi Family Resource Portal you may have seen these questions on the Q&A page there too.
We are constantly growing this list of useful questions and answers – as we try to answer all your queries! If you have a question which you think others would be interested in too, and which you’d like us to put to our Societi Professors – the leading expert in Kawasaki Disease in the UK, please contact us via the link below. Please put “Question for Societi Professors” as the subject and we’ll pass questions on, periodically updating this page with new questions and answers.
Ask Societi Professors a questions through our Contact Us page.
If you have an ANY MEDICAL QUERIES – get in touch with your usual doctor or GP. We CANNOT and WILL NOT respond to these.
Click on a question to see the answer.
What is Kawasaki Disease?
Kawasaki Disease is a type of inflammation. It mainly affects young children but it can affect people of any age. Kawasaki Disease has a range of symptoms including a characteristic and distinctively persistent high fever for five days or more. This fever often appear with two or more of the following symptoms. Rash, bloodshot eyes, “strawberry” tongue, cracked, dry lips, redness of the fingers and toes (sometimes skin peeling after ten days or more) and swollen glands in the neck – often just on one side.
Kawasaki Disease can be present with some (incomplete Kawasaki Disease) or all of these symptoms. If a child has a persistent fever with any of these symptoms, please THINK Kawasaki Disease.
Most of these symptoms occur in the first few days of the illness, although they are often not all present at the same time. There are also other typical features we see which are those of irritability (children with Kawasaki Disease are characteristically irritable!) loss of appetite, moodiness, diarrhoea, tummy ache, vomiting and jaundice.
Many parents find it difficult that there is no diagnostic test for Kawasaki Disease. In the future it is likely that there will be a test to aid diagnosis but currently, the diagnosis is based on presence of the above symptoms and the results of specific blood tests.
What causes Kawasaki Disease?
There are lots of theories around the cause of Kawasaki Disease and much research ongoing across the globe to try and identify its cause. But at the moment, no-one is certain of the cause.
There is some evidence to suggest that some children have a genetic predisposition to being affected by Kawasaki Disease. Some researchers believe it could be a child’s response to an infection or a number of infections though no infectious cause has been found. There are theories too that suggest an environmental agent – perhaps something which is airborne or related to water bodies. Whilst there is much research ongoing, some of it appears contradictory – and the patterns of incidence of Kawasaki Disease (who gets it and where) are different in different places.
What we do know is that Kawasaki Disease is on the rise – with hospital admissions in England increasing fourfold in the decade to 2015 – and identifying the cause will be a major milestone in the fight against Kawasaki Disease.
Is there a test for Kawasaki Disease?
No, as yet there is no specific test to help doctors diagnose Kawasaki Disease. A number of tests may be performed by doctors as they work to establish a diagnosis for your child and these could include:
- blood tests – looking for signs of inflammation
- temperature checks – as Kawasaki Disease has a distinctively high and persistent fever
- an electrocardiogram (ECG) which allows doctors to check the rhythm of the heart
- a heart scan using ultrasound (echocardiogram or cardiac echo) from which doctors can check whether a child’s heart is being/has been affected by Kawasaki Disease
Doctors also look for the specific symptoms of Kawasaki Disease – and they may ask you if you have noticed symptoms over the last few days – as Kawasaki Disease symptoms can appear one after the other over a number of days sometimes, not always all at once.
What other diseases might doctors consider before making a diagnosis of Kawasaki Disease?
Kawasaki Disease is often diagnosed late in the UK at the moment – this is something we are working to change! Sometimes this is because doctors decide that the symptoms are those of a common virus – or other common childhood illness. Sometimes a child who is poorly with Kawasaki Disease is first diagnosed with something else – and perhaps treatment is even given for another illness; only for a Kawasaki Disease diagnosis to be later confirmed. Some of the diagnoses which typically are confused with Kawasaki Disease include:
Streptococcal infection – the presence of a Streptococcal infection does not (as previously thought) preclude a Kawasaki Disease diagnosis – in other words the two illnesses can appear together.
Epstein Barr virus – sometimes called the kissing disease and is one of the most common viruses in humans
Staphylococcal infection – Staphylococcal bacteria can cause a wide range of infections
Measles – a very infections childhood illness, cases of measles are more rare than Kawasaki Disease typically in the UK, because of vaccination programmes
Rubella – also known as German measles or three-day measles, is an infection caused by the rubella virus
Systemic juvenile idiopathic arthritis – this is a childhood condition which affects a child’s joints
Some types of meningitis – Meningitis symptoms vary, depending on a persons age. Usually, the first symptoms can come on quickly or start several days after someone has had a cold, diarrhea, vomiting, or other signs of an infection. Common symptoms include fever, lack of energy, irritability, headache, sensitivity to light, stiff neck and skin rashes
Slapped cheek – Some people with this illness won’t notice any early symptoms, but most people will experience a few days being unwell with symptoms such as a slightly high temperature of around 38C, a runny nose, sore throat, upset stomach, headache and generally feeling unwell.
Scarlet fever – this can occur as a result of a group A Streptococcus infection. The signs and symptoms include a sore throat, fever, headaches, swollen lymph nodes, and a characteristic rash
Kawasaki Disease - How is it treated?
Children with Kawasaki Disease are treated in hospital by specialist doctors. The medication given is intravenous immunoglobulin (IVIG) and aspirin – often also with corticosteroids, with the aim of reducing fever and preventing heart damage including coronary artery aneurysms (serious damage to the heart). Sometimes other drugs are used as well, in support of these three main treatment approaches.
Early treatment is key to reduce the risk of heart damage. We work to raise awareness of this so that children can get the early treatment they need.
My child seems to get ill so regularly - even many years after Kawasaki Disease. Is this connected at all?
We know this is a common question asked by many parents and carers, so we put this question to the panel of doctors who work with Societi (our Scientific Advisory Board). Here’s what they said.
Most of the signs and symptoms of Kawasaki Disease settle quite quickly in the weeks following Kawasaki Disease, although overcoming fatigue, and building up stamina again can take some months before children return to previous energy levels.
We often hear parents say that their child has “got a weak immune system. Every time they get a cold or cough. They get a raging temperature, they get red eyes, they catch everything going around, and it’s because of Kawasaki Disease”.
It’s actually the opposite. Their immune system is primed, it’s ready to go. It remembers having had Kawasaki Disease and whether this is because there’s some underlying predisposition to having it, or whether it’s because Kawasaki Disease has fired up the immune system – no-one is certain. But there’s no established link between Kawasaki Disease and children getting more (or less!) bugs and illnesses as they grow up.
There are also wider factors which are important to consider. After all, children affected by Kawasaki Disease have had an inflammatory illness and may have spent many days or even weeks in hospital – they may experience some degree of trauma depending on their experience and just what their hospital stay involved. Often too, parents experience stress and trauma – it can be a deeply frightening experience. And that can manifest in many, many ways.
We need to be thoughtful about this issue and there’s another human factor – as parents especially, we look for explanations. Of course, we do. We might think “my child is poorly again” and this brings back all the feelings of when your child was seriously ill with Kawasaki Disease. Even after a long time, such strong memories can feel like it all happened yesterday. But that doesn’t mean being poorly today is linked to an earlier, even though serious, illness.
We have to urge great caution about attributing health problems that occur later to Kawasaki Disease, for instance skin problems (that’s a common issue that’s raised). Eczema can occur commonly. And certainly, it’s a reasonable question that parents have – might it be linked to Kawasaki Disease? But there’s no hard evidence for this. Skin problems happen in as much as 30% of U.K. children at some time in their childhood. Up to 20% of this is children with eczema alone! So, many children will have skin problems, and only a tiny fraction of these will have had Kawasaki Disease. And not all children who had Kawasaki Disease go on to have skin problems.
It’s also true to say that having Kawasaki Disease does not protect your child from developing other illnesses throughout their life. They’ll have the same chance of coughs, colds, and illnesses as all children.
We’d also mention that both as young babies and then again as teenagers – children get many viruses. This is because they are in close contact with lots of other children who are passing bugs around to each other. This year especially, many people are getting nasty viruses. This is partly because we have been isolating through the pandemic and wearing masks, for nearly 3 years. So young people (and adults too) are getting poorly with bugs that, because we haven’t been mixing socially as much, they just don’t have antibodies ready for.
There’s no evidence that shows Kawasaki Disease predisposes a child to more illness – though we understand this is a cause for worry for some people. Hopefully this explanation helps relieve that worry.
My child has been diagnosed with Kawasaki Disease — very late — and I’ve been told by our doctor that they will not now give IVIG as treatment. Why is this?
IVIG (intravenous immunoglobulin) is one of the treatments given in Kawasaki Disease to “dampen down” the inflammatory processes which occur in the first few days of the illness (the acute phase). One key aim in treating with IVIG as early as possible is to reduce the risk of coronary artery aneurysms developing, and to help prevent damage to the heart. Without treatment, inflammation from Kawasaki Disease might otherwise continue, possibly doing further damage to the heart in some children, until it eventually resolves. When a child is diagnosed late, doctors should still consider treatment with IVIG if there are signs of ongoing acute inflammation – as suggested by a persistent fever and a continued significantly raised CRP. CRP is C-reactive protein, measured by a blood test, and this will stay raised if the acute disease action is still ongoing.
In practice, IVIG is rarely administered beyond 15 days after a child’s fever first began, because the fever and other inflammatory processes will have usually resolved – though, too often, this may have caused significant heart damage in the process. That’s why early treatment with IVIG, is critical for Kawasaki Disease within the first few days of the illness, to reduce the risk of heart damage.
Kawasaki Disease - Isn't it just really rare?
No! Hundreds of children and young people are affected by Kawasaki disease each year in the UK – and it’s the leading cause of acquired heart disease in children – it’s time we changed that! Worldwide, Kawasaki Disease incidence is doubling every 10 years. There are an estimated 20,000 people – children, young people and adults in the UK today who have had Kawasaki Disease. In the ten years to 2015, our own research showed a FOURFOLD increase in hospital admissions for Kawasaki Disease in England.
We URGENTLY need parents and doctors to know the symptoms of Kawasaki Disease – and for Doctors to EXPECT to see it: be READY to treat it. For too long the association of Kawasaki Disease and ‘rare’ has hampered investment in research – but critically, this label has also adversely affected prompt diagnosis – because clinicians don’t expect to see it.
WE WANT TO CHANGE THAT! Why? Because research shows (BPSU Study 2013-2015) that EARLY diagnosis and treatment can improve outcomes – for our children.
How many people are affected by Kawasaki Disease?
About a thousand children a year are admitted to hospital with Kawasaki Disease in the UK. Increasingly common, Kawasaki Disease is affecting ever more children and young people in the UK each year. Research by Societi (2019) shows hospital admissions for Kawasaki Disease have increased three to fourfold in the last ten years in England. Globally Kawasaki Disease is on the rise – on average incidence is doubling every ten years. No-one knows why – research is ongoing to understand the cause of the disease and explain why it is affecting more children.
Tell me more about blood tests
Doctors use blood tests to monitor the illness during the early stages. There are several blood tests which look for markers of high levels of inflammation which can be used. Two particular tests which you might have heard mention of are ESR (Erythrocyte sedimentation rate) or CRP (C-reactive protein) are blood tests which look for general markers of inflammation in your child’s body. Both these markers tend to be very high during the acute stage of Kawasaki Disease.
Other tests will look at white blood cells – the cells of the immune system involved in protecting the body – and tests are likely to show that the white blood cell count is high at the start of the illness.
Blood tests also look at platelets (sometimes called thrombocytes). These are small cells in the blood which help stop bleeding by clumping and clotting in response to injuries. In a patient with Kawasaki Disease, there will often be a rise in platelet count (the number of platelets in the blood) quite early on. As the disease is brought under control, blood returns to normal and your child’s fever will resolve. However it is important to know that coronary artery aneurysms can still develop in the heart in the first few weeks. It is therefore very important that aspirin treatment is continued until your doctor advises that this can be stopped.
You don't ever (well hardly ever!) abbreviate Kawasaki Disease to KD - why?
When starting out, one of the first things Rachael (our Founder) did was take advice on what the barriers were to getting information “out there” and into the public domain. She asked for advice because she realised there must be a reason this serious disease wasn’t well known! A brilliant team of communications advisors who helped her said that using “KD” was an obvious and quite significant barrier to people understanding what is already a little known disease and one it has been difficult to get information about.
They advised that by using the abbreviation “KD” you add a further barrier and do nothing to raise awareness! After all, only people already affected by Kawasaki Disease would know what the abbreviation “KD” means. So – only by saying Kawasaki Disease (in full) can we contribute to awareness raising – and allow people who don’t know the disease to find out more. So that’s why you’ll never (hardy ever!) see Societi abbreviate Kawasaki Disease! We always say it in full – because we want to get Kawasaki Disease known!
Why "Societi" - where did the name come from?
Well, it’s not so mysterious…. but it is something we do get asked. So here’s where it came from! When thinking about starting our charity, our Founder Rachael, was motivated to create Societi because she believed (and still does!) that Kawasaki Disease should be known by everyone. It is the leading cause of acquired heart disease in our children, the most vulnerable in our society; and she feels that if we consider ourselves to be a civil society, Kawasaki Disease should be important to everyone and must be a disease that that is known by – and a matter of concern to – everyone in our society. Hence the name “Societi” – for all our society. It’s our aim to get Kawasaki Disease known by everyone! Societi is pronounced just like the word society, and spelt with and ‘i’ instead of a ‘y’. Our full name as a registered charity is Societi Foundation and we are the UK Foundation for Kawasaki Disease.
Can my child get Kawasaki Disease again?
Having Kawasaki Disease more than once is unusual, but it can happen. However, only about 1 in 50 children diagnosed with Kawasaki Disease go on to be affected for a second time. Unlike other illnesses – for some of which children develop immunity or resistance to developing it again (like chicken pox for example), there is no natural resistance built up from a first Kawasaki Disease illness.
Tell me more about aspirin
Your child will be treated with aspirin (usually dissolved in water, taken by mouth) in high doses when the diagnosis is first made. The dose of aspirin is much more than you would normally give someone for a fever. The amount of aspirin given will be calculated based on the weight of your child, (so many grams of aspirin per kg of the child’s weight). The aspirin treatment is used to reduce the fever, calm inflammation and alleviate soreness in the body. When your child’s fever fully settles, usually at about 10 days into the illness, the aspirin will be decreased to lower dose. This lower dose is given to prevent the blood from clotting inside any aneurysms that might form. Aspirin medication will need to continue until at least 6 weeks from the start of the illness – when an echocardiogram (ultrasound of the heart) will be performed to check for any damage to the heart.
In children who develop coronary artery abnormalities, low dose aspirin may be continued indefinitely. However, this dose is very small and is safe to take.
Some children may experience side effects whilst on high dose aspirin; these include headaches, tummy pain and tiredness. If your child has any of these problems and they are not accounted for by the illness itself, then the dose of aspirin may be adjusted.
It can be quite stressful trying to persuade an unhappy child who is still feeling unwell to take their aspirin. Try mixing it with juice or even disguising it in food! The only guideline to follow really is that children should have something in their stomach (preferably milk based) prior to taking aspirin medication – as aspirin can cause tummy upsets if taken on an empty stomach.
What about Reyes Syndrome and Aspirin?
You may have heard of Reye’s Syndrome, a condition that can affect the brain and liver. It has been reported to occur in children on very high doses of aspirin who are suffering from chicken pox or influenza. This condition is very rare. However, if you are concerned or your child does come into contact with or contract chicken pox or influenza whilst still on high dose aspirin, you should discuss it straight away with your doctor. It is, however, sensible to omit the aspirin for a few days if your child has a very high fever (more than 39C).
What about 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 behaviour patterns.
For some children, difficult behaviour can become a long-term problem. Research shows that between 30% and 40% of children experience some temporary 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.
More about tummy 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.
What if my child has joint pain?
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.
Why has my child got 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.
What about kidney involvement?
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.
How can I help raise awareness of Kawasaki Disease?
There is a huge amount you can do to raise awareness of Kawasaki Disease. Getting people to know the disease so that it can be diagnosed early, and children treated quickly is one of the most powerful things we can do in the fight to combat Kawasaki Disease. It is little known in the UK currently – but the disease is on the rise and we urgently need to make Kawasaki Disease well known.
On the Raising Awareness section of our website you’ll find information and resources on how you can help – how you can start a ‘Kawasaki Conversation’ in your own community or workplace. The page includes downloadable and printable information which you can share. If you’d like to plan a specific awareness raising event and would like some more information – please contact us and we can help!
Care after Kawasaki Disease
Your child will be kept under constant review for several weeks following the start of the illness. He or she will have at least three echocardiograms. ECG’s (a test which looks at the rhythm of the heart) may also be performed during the follow up period. The irritability and/or moodiness which many children experience will hopefully be reducing, but may require some patience and understanding!
Some children develop dermatitis – itchy, raised and red areas of the skin, following Kawasaki Disease. This is usually not severe and can be managed with emollient creams such as E45. If it becomes a particular problem you should discuss it with your doctor.
Many children have recurrence of high fevers, finger peeling or red eyes whenever they get an infection in the months (and even years) after acute Kawasaki Disease. This does not necessarily mean that they are suffering a recurrence of Kawasaki Disease but this is the way their body reacts to infection.
Long term follow up is recommended for all children who have had lasting heart damage as a result of Kawasaki Disease. This allows doctors to monitor your child’s heart health and general health as they grow, providing advice and guidance. You may have questions too as your child grows up and long term clinic support is an opportunity for you to ask any questions you might have to doctors who are experienced in caring for children with Kawasaki Disease.
Kawasaki Disease was identified as a condition as recently as 1967 – so we are still in the process of building up knowledge and understanding about the longer term effects of the disease. There is an increased risk of longer term heart complications for children who have had lasting heart damage from Kawasaki Disease and long-term care is aimed at supporting families, and providing access to ongoing clinical care by expert doctors.
How is Societi Foundation funded?
We currently receive no regular grants or have any major income streams – almost all the money we receive is from donations. We are enormously grateful for the brilliant hard work and amazing commitment of our fundraisers and family donors – thank you.
We have no paid Trustees – and we are lucky to be supported by many active volunteers. The charity Founder funded the charity in its entirety for the first year and a half and continues to meet any extra costs we might have – such is her commitment and determination to ensure we positively change peoples understanding of Kawasaki Disease, and improve support for children and families affected by the disease.
But our work to create influence, create change and raise awareness does cost some money – so all donations received are hugely appreciated. We work very hard indeed to make the most of every donation we receive.
We received a grant from KSSG, the parent support group, to help meet some of the costs of developing our online parent resource, and we received some funding towards some of the costs to develop a clinical learning module, to share knowledge across the medical community about Kawasaki Disease.
Kawasaki Disease - What can I do?
Kawasaki Disease is often misdiagnosed or diagnosed late, sometimes because a full symptom ‘picture’ is wrongly being awaited – or simply because not enough people know about Kawasaki Disease. If you have a child – or if you are a doctor and see a child with persistent fever, and two or more of the following symptoms – rash, bloodshot eyes, cracked lips/strawberry tongue, swollen fingers/toes, swollen glands – please THINK Kawasaki Disease.
In between times, start a “Kawasaki Conversation” – make sure friends, relatives, colleagues and your local schools are aware of Kawasaki Disease. Awareness is urgent – Kawasaki Disease is serious. Awareness will make a difference. You can make a difference. If you’d like to help raise awareness, you can get started by downloading an information pack here – Your Kawasaki Conversation.
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