Kawasaki - the disease not the motorbike

January 26th is International Kawasaki Disease Awareness Day.

Had you heard of it before you knew me? Would you know the symptoms? Do you know how devastating this disease can be?
“Kawasaki Disease is the leading cause of acquired heart disease in U.K. children. With over 1,000 hospital admissions* for Kawasaki Disease in the U.K. each year and rapidly on the rise, it’s more common than bacterial meningitis and measles – even with the current outbreak. As parents, we’d like to think we knew these serious diseases. But few parents and far too few doctors know Kawasaki Disease. Increasingly common and just as serious – I’m committed to changing that.” [Rachael founder of Societi]

For us our journey with KD began long before we knew what it was. Daniel was my second baby and  although he was more demanding than Luke, I wouldn’t have said I was a neurotic parent. It was 1993 and he was about 15 months old when he woke up poorly. He was running a temperature, was quite flushed and very miserable. I suspected an ear or throat infection so got an appointment with our Gp. He suspected an infection too and gave me antibiotics as well as paracetamol. After a night of broken sleep trying to sooth my crying baby as I got him undressed the next morning I noticed a rash across his body. Another trip to the GP and he suggested it might be a reaction to the antibiotics and to keep an eye on him. His symptoms began to get worse. Still a high temperature, red eyes and cheeks, runny nose and cough. He wasn’t keeping food down either. On the evening I got a phone call from my Gp which seemed very out of the ordinary. Dr Saleem was quite old fashioned in his manner and could seem quite brusque but I trusted him and this call backed up my intuition about him. He asked ‘How is the boy?’ I explained that he wasn’t good, if anything worse. He told me, he had been playing on his mind and he wasn’t sure about the symptoms and that if he didn’t improve or got worse to go to A&E. That night was just horrendous. Daniel kept us awake crying, he was burning up and the final straw came when he threw up and it was luminous green. A trip to A&E was needed.
When we first arrived they listened to our concerns. His temperature was too high so he was stripped and given paracetamol. We were looked after by a male nurse who was lovely. We waited to see a doctor but when he came he was very dismissive. Said it was most likely a virus with an allergic reaction to the antibiotics and to go home and only come back if it persisted or got worse. I remember feeling like a fraud and that I was wasting their time. The nurse though was great. I think he disagreed with the Dr. He said that he would get a dose of Piriton for him before we left. He then suggested if he was due a feed to give it to him to hang around a little because if it was an allergic reaction we would see some clear improvement within 20 minutes. He came back to check on us and there was no improvement. He ran his obs and his temperature was even higher over 100. He said he wasn’t happy and that he was going to page the on call paediatrician. When this guy arrived it was all panic stations. Meningitis was mentioned, then scarlet fever then slapped cheek syndrome. He wanted him admitted so off we all went to the children’s ward. As we entered the matron appeared, she was quite formidable, much like the Hattie Jacques character from Carry on films. She said to the doctor ‘What is wrong with that child’ the young doctor explained that he wasn’t sure and she proceeded to tell him Daniel couldn’t come on to the ward in case he was contagious as she had lots of sick children who would be put at risk. Seeing my face she said, clearly this child is sick too and too hot. She then ushered us into what I can only describe as a store cupboard. She listened to his symptoms and suggested it might be measles. She went to get the biggest dose of paracetamol suspension I have ever seen plus two chairs. When I baulked and said he hasn’t long had some she said it was fine and it was crucial we get his temperature down. She went off to make a call and eventually we were found a room in another part of the hospital where he could be put in isolation.
We were seen by a senior paediatric consultant who diagnosed measles. I explained that Dan had been vaccinated.  He was quite patronising and told me it was lucky he had been, as measles was very serious and if he hadn’t have been it could be worse even fatal (oh the irony) he offered that we could be transferred to the infectious disease centre at East Birmingham hospital or if I was happy to, I could nurse him at home. I decided to go for this option.
The following couple of weeks are a blur if I’m honest. I had an old style carriage pram which Dan had pretty much outgrown but he could lie down flat in it. So it was brought into the living room and here was where we nursed him. We could rock him in there to give our arms a rest and soothe him to try to get some sleep. He was sick a lot. He didn’t really eat much so I kept trying him with bottles as much as I could. His temperature continued to spike up and down. His eyes were sore, his tongue too and his lips became red and cracked. His hands and feet were red and the skin started to peel. I remember feeling helpless. He had become so weak. He was a chubby toddler and the weight had fallen off him. He was pale, listless, miserable and could barely stand.
One morning taking Luke to school I bumped into my health visitor. She said hello, how’s things? (you don’t spend so much time at clinic with baby number two). I blurted out how poorly Dan had been and how he just didn’t seem to be picking up. She looked at him and agreed he looked unwell. She took my address and said she would call in later. True to her word, she did. She weighed him and he had gone from the 90th percentile to the 25th. A massive weight loss. She was lovely, she listened and took me seriously but didn’t know what was wrong. She agreed he was not a well boy. She wrote a letter with a hospital referral for tests.
There were no beds at the Birmingham Children’s Hospital so we were sent to the Children’s ward at Dudley Road. Initially they suspected leukaemia but that got ruled out. He had lots of tests but nothing showed up. We were in about a week. They did try to discharge him midway through and he promptly projectile vomited across the whole ward so we stayed. They decided he had a post measles immune reaction and that everything was making him ill. Basically they didn’t know.
Eventually Dan returned back to his usual self but it had been a long haul. None of my kids either before or since have ever been so ill. With hindsight he did get cold hands and feet and sometimes he would cry, get hot and bothered and need to sleep it off. Nothing to cause alarm at the time but clearly his circulation wasn’t what it should have been.

My next encounter with KD was when I watched a Panorama documentary about the disease. It was hard hitting and I recall thinking how much the symptoms sounded like how Dan had been. It was 1996. They say you should never dwell on ifs and maybes but I do regret not taking that further.

Then on 17th May 1997 our relationship with KD got very real with devastating consequences. It was Dan’s 5th birthday and during his party he became unwell. Feeling sick and in pain. He feel asleep then woke up saying he felt better so we went to my in-laws for party number two - the FA Cup final. During this Dan told me he felt sick. We went upstairs where he collapsed. His heart had stopped. We didn’t know it yet but KD had caused a coronary aneurysm in the aorta, which had become blocked.

I won’t dwell on what followed but I kind of just knew. I told the doctors at the hospital about his KD symptoms. They tried to save him but he was gone. We were broken.

His post mortem stated that they were 99% sure he had had Kawasaki disease back when he was 15 months old. They said his vascular system was like that of an old mans and he was never going to make old bones. They said it was amazing that he didn’t have any other symptoms causing things such as amputations. They said if he presented now with these symptoms he would more likely get diagnosed. I’m not sure I agree with that. Even now 23 years later too few medical professionals still understand KD and it’s presenting symptoms.

So it is that our journey with KD never ends. It’s part of the fabric of our family. That’s why I’ve written this today. To raise awareness. To try to prevent others from what we have had to go through. Please if you’ve read this far, help to spread awareness too. #ForDan

A Glimpse of the Black Dog

I consider myself lucky that I have not had a visit from the black dog for many years. Yesterday was not a good day and it felt a little like the days when that damned dog was my constant companion. Everyone who knows me knows I’m no dog lover and I make no exception for the black dog. The prospect of him coming for a visit was as unwelcome as it was unexpected. Luckily I’ve woken up today and he has silently passed by the door and on his way which is a relief.
On reflection I think I was teetering on the cusp of a bad day all week. I’ve woken up a couple of days with a headache and I’ve not been sleeping well again. It’s been quite a busy week with hospital trips and I felt a little fatigued by it all.
Thursday ended well with a bite to eat out with a group of my girlfriends. I had a good time, three drinks and it wasn’t a late finish. Seems like I may have become a lightweight though because I had a terrible night with a headache and hot sweats so very little sleep. I eventually slipped into a decent sleep as everyone else was leaving for work and then was woken by my alarm shortly after.
It was a the day of my CT scan for my radiotherapy but I hadn’t felt like that was a big deal even turning down offers of support to come with me. I’m not sure if that was the wrong decision and I had been kidding myself, I certainly didn’t feel apprehensive but nonetheless I woke up with that heavy feeling, like the dog has slipped in overnight and is lying across your chest.
It’s hard to describe if you’ve never felt it. I felt bone tired and like I was carrying an invisible weight. I got myself ready and went off to my appointment. There was lots of information (again) more detailed perhaps than before and as a result of my CT scan the team gave me three tattoos that will enable them to line me up correctly every time whilst I’m having my treatment. This is to try to keep damage to the healthy cells to a minimum. So in my 54th year I’ve achieved another milestone of my first tattoo. I don’t think I’ll be repeating it though. I was also given my start date for my treatment which is not as soon as I had hoped so that was another little chink.
Whilst I was in the Unit someone got to ring the bell to say they were cancer free. This was lovely and everything stopped so we could all applaud but to me in my delicate state it was also somehow a stark reminder that this is real and I am a cancer patient. Sounds silly I know with everything that’s happened so far but there you are, it’s felt like I’m in some kind of no mans land for a while whilst I’ve been recovering from my surgery and waiting for my treatment and that has been a little surreal.
After my appointment I headed to the nearby retail park but even retail therapy couldn’t lift my spirits so I headed home. The weather was awful so I decided to make myself a hot chocolate, settle on the sofa, crank up the heating and watch a bit of junk tv.
So there my hubby found me when he came home, having a good blart. (Me not him) I think he was a little surprised as I’ve been so upbeat all the way through and he was also a little disconcerted as I don’t usually cry much. I wasn’t really able to explain what was wrong and he then felt bad for not coming to the hospital with me but it really was my choice to go alone and I don’t necessarily think that was the problem.
For anyone who has had depression before it’s always a concern that this isn’t just a bad day and that this is the start of a period of being ill again but thankfully I have slept a bit better and woken up without that awful feeling today so I can breathe deeply, relax and enjoy my weekend. Dog free.