Michelle’s Story

My name is…

Michelle

I am the mother/father of…

Violet

My child is … years old.

5

I want to help protect tiny hearts from the devastating consequences of Kawasaki Disease – the number 1 cause of acquired heart disease in U.K. children because…

When Violet was 3 she came down with a temperature on a Sunday evening in the summer. She also complained of a tummy ache overnight and on the Monday, she lost her appetite and became quite irritable. We took her to see the GP on the Monday afternoon and they told me that her symptoms seemed viral although difficult to diagnose as not many symptoms so it could be anything. The GP suggested we continue to monitor her and if she vomited to take her to A&E. As it happened she was sick on Monday night so we took her to A&E and again we’re told it was viral. On Tuesday Violet developed a rash on her body and had red hands and feet. Over the course of Tuesday and Wednesday she developed a strawberry tongue and red eyes and the rash continued to spread. We took her to out of hours Doctors Wednesday evening after phoning 111 and were told it was still viral and nothing could be done. We were also told the rash could be an allergy to Nurofen (which we were alternating with Calpol to try and keep her temperature down) so to stop Nurofen and give Piriton to help the rash. At this point Violet had every single symptom of Kawasaki Disease. On Thursday Violet was lying lifeless on the sofa and my husband and I decided to take her back to A&E. I knew in my gut that this was more than just a virus and this time we finally saw a Dr that listened to us and admitted her to the children’s ward. After an overnight stay we were told that they thought it might be Kawasaki Disease and would start treating her with plasma. Treatment started Friday morning and by the evening Violet had perked up considerably and even wanted to spend some time in the play area. She came home Saturday afternoon. The irritability stuck for another 3 weeks and we had to take her for ECG’s every 6 months for the next two years.

How Kawasaki Disease affected my family …

When Violet first came down with a temperature my son was just three weeks old. I spent the next three weeks (rightly) focusing on Violet and her recovery, but I will never get that time back with my son. We count ourselves as lucky because we kept taking her to various healthcare professionals and finally saw someone who believed us before we passed the stage which could cause permanent damage but it could so easily have been worse.

The thing I wish I had known is …

I wish I had known about Kawasaki Disease and also that health care professionals had been better informed. By Tuesday Violet had a temperature, swollen glands, was irritable and had a rash and red hands and feet. She was already showing a number of symptoms and had I been aware at that point I would have gone back to A&E and pushed them to look at Kawasaki Disease.

The advice I want to give parents is …

Trust your own instinct, you know your child so be their advocate. Don’t feel afraid to keep going back to the Doctors if you aren’t sure.

Is there anything else you’d like to tell us about your experience of Kawasaki Disease?

Education of everyone involved would have made things so much easier. It was hard to find information about this disease until we had actually experienced it.