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Neeyan’s Kawasaki Disease Journey
June the 26th 2016 was the day my healthy and active 8 year old son first got a high fever, which I thought was the start of a normal virus and didn’t really think much of at the time; I managed it with Calpol and Nurofen. After day three, a rash appeared and like many parents would, I thought of meningitis and did the glass test. However the rash faded. I breathed a sigh of relief, but also started to get the gut feeling that something was seriously wrong and it didn't feel right. Neeyan’s fever was not dropping and his symptoms were getting worse. He stopped eating, was really irritable and was struggling to walk. Then he started to really freak me out by hallucinating and being delusional. Symptoms came and went away again and after 5 medical assessments, either at the GP or at our local hospital, we kept being told my son had a viral infection. He was prescribed antibiotics but I just knew it was something so much more.
Neeyan was not getting better, in fact he was getting worse and I decided enough is enough and took him back to the hospital. I remember waiting an hour in the hospital with Neeyan lying in my arms. He was deteriorating so badly that I almost got up and was about to be that frantic parent who shouts at the receptionist; but then we were called in. This doctor was on the brink of discharging us with a change in antibiotics and a diagnosis of Scarlet Fever; but then she moved her stethoscope to his heart and that is when my world turned upside down. He was immediately rushed into emergency with a heart rate of 230 and an open diagnosis.
That began the worst night of my life, just sitting and watching. The doctors were not telling me anything except that the diagnosis was open, as they started him on IV antibiotics and IV fluids as he had not eaten in 5 days. I never slept the whole night as I watched Neeyan heart rate soar so high and then drop. It was crazy listening to all the beeping. Hospitals are not good places in the night for sure!!! He was just so sick and I couldn’t do anything except watch. I couldn’t cry as I was in shock and couldn’t take in what was happening. I kept looking at the notes which I had been keeping and trying to work out if I had missed something. For some reason I didn't even go to Dr Google which is a surprise as I am such a googler!
I answered questions after questions from many doctors who were all interested in Neeyan but no-one was giving me any answers. They kept us isolated but we were stuck in A&E as there were no beds on the ward. Neeyan had to have his own room because they did not know what was wrong with him. Precautions I guess.
It was the next day when our consultant came in with six other people, who I now know were Trainee Students. It was then he first spoke the words "Kawasaki Disease." I had never heard of this before and I was certainly never prepared for what was about to unfold over the next 9 days. With Kawasaki disease there are no blood tests and a clinical diagnosis is made based on the symptoms that Neeyan presented with. These were high fever, rash, lethargy, arthritis (Neeyan couldn't even walk), swollen glands, swollen feet and hands, extreme irritability plus so many more......
I could not believe what I was hearing when the consultant said he was 10% sure that it was Kawasaki and I recall challenging him on treating my seriously ill child based on a certainty of only 10%. That consultant trusted his gut that day in making a clinical diagnosis and looking back now, it was he who saved Neeyan’s life. I will forever be in his debt as I now know that sadly this is not the case for many parents of children with Kawasaki.
The consultant said they would start treatment straight away with high dose aspirin 4 times a day and stomach protectors. The main medicine was a blood product called Intravenous Gammaglobulin. The main priority was to reduce his fevers and save his heart from damage. I was reassured that a treatment plan was in place. Once again I trusted my gut and we had a diagnosis on day six of the ten day window which had been allowed.
I thought all was now on track - but No!!!! Neeyan became resistant after two doses of IVIG and needed more aggressive treatment. This is rare in itself as IVIG is meant to be the best. They couldn't control the inflammation as the disease managed to find its way through Neeyan's body and the Kawasaki disease was not content until it had damaged Neeyan's heart. To be told there was no choice but to change the treatment plan was pretty tough to deal with. How could I not have a choice when I live every single day by my choices in work and at home; but now I had no choice except to trust the medical team in their efforts to save Neeyan's heart from any further damage.
It seemed to me like playing roulette with Neeyan’s life as they continued to treat Neeyan for Kawasaki disease, but as he was not responding they still kept his diagnosis as “open”. They continued to take bloods every day to rule out any other possible life-threatening illnesses. Neeyan needed high dose methylprednisolone and then Infliximab to finally halt the inflammation. However despite my best efforts even I couldn't save Neeyan's heart from being damaged. When Neeyan’s heart broke my heart broke too!! Neeyan’s coronary arteries had dilated to 4mm at the time and he currently has to take Asprin every day to prevent his blood from clotting, along with regular follow-up Echo's on his heart.
Neeyan had his first ECHO Stress test done a year ago too. Neeyan will be under long term surveillance for life now to keep an eye on his heart. To me it seems not fair that Neeyan has to go through all of this at such a young age however he is so brave and strong and is my HERO.
Neeyan is doing well now and back in school. However as a result of the KD the school recognised a change in Neeyan’s behaviour and support us through “Place to Be” (a counselling service). The long term follow up care within the UK seems to be inconsistent and that is a worry for many parents. You are already battling against something you have never heard of but then you then have another battle on your hands with follow up care. Thankfully I did my research and we are now followed up at the Evelyna Hospital. I am so grateful for their follow up care and I now trust that my son will have the very best of care; but sadly this is not the case for many parents.
Now I am on a mission to raise as much awareness as I can to save other children’s hearts from being damaged. Kawasaki disease is known statistically as a rare disease, however since our diagnosis I am finding it is not so rare and more common than we think. The numbers are increasing year on year here in the UK. However hardly anyone knows what this disease is despite it being the Number 1 cause of ACQUIRED heart disease in the UK in children.
My awareness campaign will never stop as until we know what causes Kawasaki disease as I am convinced that once they find the cause they will also find the cure and I want to know why Kawasaki disease chose my son in my life time.
Kawasaki disease is more common than some types of meningitis. However whereas meningitis is now widely recognised, few know of Kawasaki disease. It’s time we changed that and got parents and the medical professionals all recognising the symptoms and thinking of Kawasaki disease - #ThinkKawasaki
Societi and KSSG are both volunteer-funded organisations which are fighting for more awareness of Kawasaki disease. However they are also fighting for UK diagnostic protocols, so there are no more misdiagnosed cases, along with clear UK guidelines for treatment and long term follow up care. Neeyan’s journey is all part of this and will now appear in eLearning modules for medical clinicians as well as short videos to support new families of children who have been diagnosed with Kawasaki disease.
I support both these charities as when Neeyan was diagnosed I decided that no parent should be in the position of ignorance that we were in. If I had just known about and thought of Kawasaki Disease, Neeyan’s outcome may have been better. I have raised awareness in many ways and will continue to do so, as awareness, knowledge and understanding of Kawasaki Disease needs to be raised in the same way that awareness of both Meningitis and Sepsis was raised by recent campaigns.
Thank you for taking the time to read about Neeyan’s Kawasaki Journey.
Neeyan's mother Neeta has made a short video about their experience