Timeline of Illness for William Hutchinson
Below is the timeline of illness for William Hutchinson, a KD survivor.
Sunday 3rd July – Loss of appetite, temperature.
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Monday 4th July – Consistent temperature when due paracetamol, still no appetite and struggling with fluids. Very tired. Sweaty. Stiffness in neck started late afternoon.
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Tuesday 5th July – Symptoms as before, vomited twice in the early hours. No interest in food. Taken to Urgent Treatment Centre in Goole as stiffness in neck worse and unable to move his head without turning his full body. Obviously in a lot of pain and distressed. Very high temp when we got there, given paracetamol and ibuprofen. Obs taken and he was assessed. Told it could be tonsilitis and may need antibiotics, but none given. Advised to speak to GP if not happy. Not concerned about lack of movement in neck. Later that day, large, painful lump developed on the left side of his neck. Wouldn’t let me touch it. Stiffness in neck got worse. He didn’t sleep all night, he was screaming and crying. Very hot. Couldn’t get comfortable.
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Wednesday 6th July – Symptoms as on previous days. Took him to see GP. She suggested possibly Mumps or Glandular fever, but both were unlikely. Advised to keep an eye on him and keep on top of meds as still getting a temp. No interest in food. No interest in playing or watching tv etc. Stiffness and lump on neck no better and still extremely painful for him. Complaining of sore throat. Very tired and cross.
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Thursday 7th July – Much the same. Still spiking a temp. Hardly eating. No interest in anything. Couldn’t get comfortable as neck too painful.
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Friday 8th July – Went back to GP who did obs, weight etc and then admitted to Hull Royal Infirmary PAU. They fitted a canula and did bloods and swabs and started him on co-amoxiclav while they waited for results. While on the assessment unit they did his obs every two hours and gave regular paracetamol. He was still getting a temp and very uncomfortable. Very tired. Still no appetite. He had bloodshot eyes and very dry, red, cracked lips. He had ‘strawberry’ tongue. We were moved to Children’s ward 130. We were told a Dr would be coming to see us from 6pm when the rounds started to discuss the blood results they had already received back. We had to ask for paracetamol 3 times as he was very distressed and hot. At 9pm we asked when the Dr would be speaking to us, and they said it would now be the morning. We asked why as we had been told someone was coming to see us that night. We were told they would get someone to speak to us if they could. At approx. 11pm a Dr came to see me and said they were not ruling out tonsilitis, but they were thinking it could be Kawasaki disease. No further information given but told consultant would speak to us again in the morning.
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Saturday 9th July – William had obs and medication administered every 2-4 hours through the night so very unsettled. Still very uncomfortable. Still very hot. Really struggling with the pain in his neck and lack of movement. Consultant came and said they were still thinking Kawasaki disease. Would need to keep him in for a few days, would re-do bloods and do an ecg and echo. Would carry on with co-amoxiclav as a general antibiotic to cover him while they were still assessing him. We were told that it was a time sensitive condition and the first line treatment for Kawasaki disease needed to be administered within the first 10 days of symptoms starting, which we were still in as it was seven days from him starting with a temperature. Nurses did obs regularly, but we did have to chase paracetamol and antibiotics and I also asked if he could have anything else as he was so distressed and uncomfortable. A Dr came in to confirm that I had requested this and said she would sort something, but nothing was given until much later after asking again as I was struggling to calm him down, he was very upset – ibuprofen was given. He was unable to walk when we took him for a shower, he said his legs couldn’t work properly.
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Sunday 10th July – Through the night William woke up wet through with sweat and – I assume – a very high temperature. I went to find a nurse to ask for paracetamol. I was given some, but no one came in to check his temperature. Obs were done less frequently through the night. When the consultant came in that morning, he said they would be removing his cannula and sending him home with antibiotics to finish orally as he was ‘clinically better’, although how he knew this, I am not sure as no one clinical had spent any time with him other than doing obs and administering medication. I questioned why he was going home as the last thing we had been told was that they were keeping him in to re-do bloods and scans etc. He said they had ruled out Kawasaki the previous day (no one had told us this) as he had not got worse, he would be more miserable and ill if it was that – he was extremely miserable and poorly. When the nurse came to remove the canula we said we were not happy for this to be done as no one had given us a diagnosis. A Dr came to see us and said he had Lymphadenitis and a viral infection. We were still unhappy to take him home as from what I could see he was no better than he was when he first got admitted. We were told if we had any concerns, or he wasn’t improving we could ring the ward and they would see him again without having to go to A&E. They removed the canula and we left. He couldn’t walk at all so I had to carry him. He screamed in the car until he fell asleep. He was very overwhelmed when we got home and unable to do anything for himself. He needed assistance lying down, sitting down, standing up etc. He still was not eating and we were struggling with fluids. He cried a lot saying his legs weren’t working and he didn’t know how to walk. He was getting very confused and upset saying he just wanted to go back home and not understanding when I told him that’s where we were. He was very unsettled through the night again. He still had a temperature that evening.
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Monday 11th July – Much the same. Neck still sore, still no appetite. Still very wobbly on his legs and saying he didn’t know how to walk and his legs were sore. Very sad and cross.
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Tuesday 12th July – As before. Neck had slightly better movement and lump looked to be going down a bit. Still no appetite. Sick four times from teatime and into the night, unable to keep paracetamol down so high temperature throughout the night.
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Wednesday 13th July – Called Hull Royal as concerned about continuing temperature and vomiting. They said not a problem. Ring GP or go to A&E if worried. He started to pick up a little bit in himself. Kept on top of paracetamol, still taking antibiotics. Very hot, tired, and cross. Still not got much appetite. Less wobbly on legs but still not walking much.
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Thursday 14th July – A little happier in himself. Still poorly but brighter than he had been. Temperature stable. Eating a bit more.
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Friday 15th July – Our GP had arranged blood tests in Scunthorpe as they had not been repeated in Hull. I took him for those. Later that afternoon, I noticed the skin around his fingers was peeling. I rang Hull Royal Ward 130 as I was quite anxious given what I had read about Kawasaki disease, and they had told us to look out for this when he was in hospital the previous week. They told me to call back to the PAU instead. The Nurse I spoke to spoke to the registrar and told me if he was ok in himself, he was fine. She said he may have had Kawasaki disease at some point, but it sounded like he was ok now. After speaking to my Surgery, I was advised to ring the Kawasaki Society for further advice. I spoke to a lovely lady called Sue at the Kawasaki Syndrome Support Group. I told her the full timeline of events and she advised that it sounded like he definitely did have Kawasaki disease but given that he was now ok in himself and his fingers were peeling it was too late for the initial treatment of immunoglobulin, as despite what we had been told in Hull, once the initial fever stage of the condition was over you would not expect him to be ill in himself. She said that I needed to speak to my GP straight away to arrange for William to have an urgent echo and to be started on aspirin. After much ringing around various hospitals and speaking to Professor Levine in London, my GP managed to arrange for him to be seen in Sheffield that night, they were brilliant. They kept us in until the Saturday evening after confirming that, based on all the symptoms William had been experiencing over the previous two weeks (and given that Kawasaki can only be diagnosed through symptoms and not a test) he did have Kawasaki disease and they started him on Aspirin and Lansoprazole. They organised an urgent echo for the following morning. Luckily, this looked clear, and they have given us a follow up appointment for another echo and appointment with the cardiologist on the 23rd of August and told us to keep him on Aspirin and Lansoprazole daily until then. Sheffield advised us that they could not comment on the treatment he had received elsewhere but that we should contact PALS. We are very fortunate that we have a GP who listened to us and acted on things quickly to get us the urgent care he needed.