Saturday 3rd June ~
Well, the weekend arrived and for once we were enjoying glorious blue skys and fantastic temperatures. We had a BBQ and invited some friends over (who were not concerned about catching chicken pox),lol. The children had friends over and were busy playing football or on the trampoline. I was concerned enough about Ethan's eye that I phoned NHS Direct during the afternoon. They gave me advice and told me not to worry unless it became oozy or infected. In the evening, I notice an odd rash on Ethan's chest. It looked like a heat rash and I put it down to him being in the sun.
Sunday 4th June ~
I was more concerned about Ethan's eye as it looked swollen and bruising was developing, it was quite blood shot and he now had this odd rash creeping up his legs. I telephoned our surgery and waited for one of the emergency doctors to call me back. We were told to take him to our local walk in centre an hour later. When I changed Ethan I was horrified to see 2 biggish bruises on his body. The area was swollen and I was really taken back when I saw them. The bruises were jet black tinged with blue/purple, just like someone had tipped ink over him. He didn't seem to be in any discomfort with them at all. I had visions of the doctor thinking he had been abused or something, they really were quite shocking.
The doctor confirmed that Ethan's eye was infected and prescribed some anti-biotic's. The doctor told me that the rash was just a heat rash and not to worry. He also looked at his bruises and immediately said "What is that"? whilst pointing at them. I had sort of laughed and told him I was hoping he would tell me! After further investigation he said they were just bruises and not to worry. Ethan didn't even find them sore, which I thought was a bit odd. He also had a couple of tiny bluish looking bruises starting to develop elsewhere.
Ethan was absolutely fine in himself and as active as he always is.
Tuesday 6th June ~
After discovering blood in the urine I took Ethan straight to my GP and he was admitted to hospital by 10am. Blood was tested and we had to wait 48 hrs for the full results. The doctors suspected ITP. ITP is more a diagnosis after a process of eliminating other conditions. Ethan's blood count was 11. That is 11,000. A normal platelet count should be between 150,000-450-000.
Wednesday 7th June ~
Ethan had been awake for 10 minutes when his nose started bleeding. It wasn't gushing, just a steady trickle. This was to last all day and into the early part of the evening. His blood count came back at 6 and at lunchtime Ethan started an Immunoglobulin transfusion (IVIG), followed by a platelet transfusion. At some point during the afternoon it dawned on me just how serious this all could be. In a way it was a blessing that I was camped out at hospital with no internet access. I think it was much harder for family and friends who had the time to look into this and knew what we were facing.
Thursday 8th June ~
Today, Ethan's count had rose to 27, which is great news. There was a little blood on his pillow from through the night but no further bleeding, although still a little in his urine. Today brought fits of fever, headaches and sickness. I was told that Ethan must have caught a bug in the hospital, although on later investigation, I realise this is a side effect of treatment. The specialist ordered 5 days of IVIG treatment which were to be given over night whilst Ethan was sleeping.
Saturday 10th June ~
The specialist wanted us to take Ethan out for a few hours. We were very nervous but grabbed the buggy from the car and strapped him in. A few times we let him out to walk but I was a nervous wreck from trying to act as a human bumper shield for him. We had some odd stares from people and many thought he had been in a bad car accident. I must say that although Ethan's visual appearance was quite grim that apart from when he was sick, he was like his normal, happy self. He wanted to run and shout and play power rangers or bounce on the bed. He had no discomfort from the bruising whatsoever. I am glad he wasn't in any pain but it made it hard work to try to keep him still.
Sunday 11th June ~
Ethan's count came back at 327! The lab double checked and the consultant ordered another batch to be done. It was true - they were indeed 327. This is well within the realms of "normal" and Ethan was allowed home with no special instructions. We had to return on Wednesday for another blood test and then we would monitor it from there.
Left: Ethan getting bored, waiting to come home
Right: Good friend Cindy with Ethan whilst Andy removes his dressings
I wanted to tell people about our experience with ITP. Many thousands of people all over the world suffer from this emotionally draining disorder. I feel quite humbled by my experiences and awe-inspired by those who live day to day with these two conditions.
My youngest son - Ethan- was diagnosed with ITP shortly after his 4th birthday. I am going to start by saying he is home, fine and still trying to bounce on the beds! At the bottom of this page you will find a link where you can view photos, although not overly gruesome, these photo's really aren't suitable for children. I have included them so that it might help someone else recognise the symptoms earlier in their own children.
