Questions to Ask your Doctor
Perhaps you/your child has just had a Kawasaki Disease diagnosis – or maybe you’re about to attend a routine appointment. One of our Societi supporters, Debbie, gives some great advice to parents in her film (you’ll find that here) as you prepare for a clinic visit.
In a nutshell, she says there’s no such thing as a stupid question when it comes to Kawasaki Disease! And she is right. You should feel confident asking all and any questions to your clinician – Debbie suggests getting your thoughts together ahead of the appointment and writing any questions of key points down – that’s brilliant advice as some parents find the appointments themselves quite demanding; and time is sometimes limited.
Questions you might ask:
Does this hospital have a specialist Kawasaki Disease clinic?
There are just a few specialist Kawasaki Disease clinics in the UK. There is one in London and one in Bristol but we are actively promoting the need for more – as more and more children are affected by Kawasaki Disease each year. Whilst your hospital may not have a Kawasaki Disease clinic, you may be being seen already by a doctor with knowledge in and experience of Kawasaki Disease – and already getting the best possible care. It’s helpful to speak to your doctor about this.
If you’d like to ask for further advice from a specialist clinic however, the Bristol clinic (led by Professor Robert Tulloh at the Bristol Royal Hospital for Children) takes referrals for children who have had Kawasaki Disease, from anywhere in the UK. If you’d like to be seen at this specialist clinic you can ask your local hospital or your GP for a referral. An alternative to travelling perhaps long distances for a clinic visit, it’s also possible for your local hospital to liaise with one of the specialists clinics on your behalf and provide your care locally, with the benefit of national expertise. Discussing these options with your doctor will help you decide on the best possible care for your child.
What does my GP need to know?
It’s likely that your GP / your child’s GP will have been copied in to all relevant correspondence about your Kawasaki Disease diagnosis and future treatment needs. If you’re not sure whether this is the case you can ask your doctor to make sure your GP has all the information they need. This is particularly important if your child has ongoing medication requirements and will need regular prescriptions. Do ask what the route for getting future medication will be – and who to speak to (GP or hospital doctors) if there are any issues about medication which you need to discuss.
Societi have developed a ‘Longer Term Issues’ leaflet with our Scientific Advisory Board. This looks at the range of issues which some children can experience and has been written so that it can be shared with school, nursery and carers. But it is also helpful for GP’s too – not all know about the longer term effects of Kawasaki Disease so do share it with your GP if you think it would make a discussion easier. You’ll find it here: Longer term issues leaflet
What does my child’s school / nursery need to know?
It is very helpful if, when returning to school or nursery, information from your doctor on specific things school/nursery need to know can be shared. Ask your doctor about this – they may be able to write a letter to school – or may suggest your GP helps you with this. There may be some key facts which, as your child continues their recovery, it is helpful to share. If taking aspirin for instance, one of the possible side effects of this medication is bruising. Children taking aspirin can bruise much more easily than those not taking medication and school should be alerted to this – and a note put on their records.
Societi have developed a ‘Longer Term Issues’ leaflet with our Scientific Advisory Board. This looks at the range of issues which some children can experience and has been written so that it can be shared with school, nursery and carers. You’ll find it here: Longer term issues leaflet
When is my next appointment?
This might seem like a silly question! It isnt!! We know that sometimes follow up appointments are not given automatically. Do ask confidently when your child will next be seen and if no further appointment is offered, and you have checked the recommended follow up care guidelines (see the Follow up care section in My Kawasaki Journey), ask for the reasons why no further appointment is being scheduled. If you feel it will be helpful, download a copy of the current UK guidelines and take these with you – or suggest to your doctor that they take a look at the recommendations.
What will my next appointment involve?
Do ask your doctor when your next appointment will be and what that is likely to involve. That way you can prepare yourself and your child ahead of time – for questions to ask and for any tests they may need to undergo. If you have been advised of the need for tests at your next appointment, please visit our Hospital Tests page for information videos which show what can be expected for some of the key tests used for Kawasaki Disease patients. It’s helpful for many parents to make a note of questions and concerns in advance of your appointment too – as you can find the appointment goes by quickly and you may come away without answers to some key points.
What is – or was – our ‘z-score’?
If your child had a coronary artery aneurysm, whether resolved or not, it’s helpful for their future care if you and your doctors know what the ‘z score’ for their aneurysm was (when acute). The z-score is a way of recording artery size in comparison to an average healthy artery for a child of similar age and weight. In the UK we know doctors often measure aneurysms in millimeters. But this is not considered to be best practice. Why? Because, as children grow, their arteries grow – a particular millimeter measurement might be thought to be ‘significant’ for a tiny infant but in fact could be a normal artery measurement for a (much bigger) 10 year old. In other words, measuring in millimeters can give us misleading information – so understanding the ‘z score’ – which describes their aneurysm relative to a typical unaffected artery in a similarly sized / aged child, is a much better basis on which your doctor can understand the heart damage which may have occurred, and plan for the future care needs of your child.