Hi all, I was researching and came across this website. I wanted some info from actual parents who have been where we currently are. We have five children, the youngest 2 and a half was diagnosed 6 weeks ago with ITP after we took him to hospital with bruises and the rash and nose bleeds. His count was 4000. A week of steroids didn't work - he was at 7000. A week with nothing didn't work - similar at 8000. A few of my other children were sick and by the end of that second week he came down with coughing and a high temp and heavy prolonged nose bleeds - one took three hours to completely stop. Count was at 3000. So he was admitted and given an infusion. He was the sickest we'd ever seen any of our kids in 14 years. Terrifying. He is currently also in the process of being diagnosed on the autism spectrum disorder so the whole experience has completely terrified him. It took five days for his count to go from 3000 to 11 which they then released him. A week later it was at 33, then dropped the following week to 17, and now with new bruises and rashes it's dropped to 6000 today - no bleeding yet though. He is being sent to the haematology unti next week if no more bleeding, otherwise we're to go straight to the ER. We've dealt with only the children's hospital here in Australia, not the GP. We're worried for him and wonder how long he'll go up and down. It's so interesting and heartbreaking at the same time to read others' experiences and I'm desperatly wanting someone to give us direct answers. I'm terrified he'll get a bug again while he's low and he'll end up getting another tranfusion - I never want to see him have a nose bleed ever again. The Intragram didn't work very weel we were told neither did the steroids - what can a haematologist do?
I am no expert, but I would think that his chances of completely recovering from it within 6 months or so are high - firstly because most kids do recover within that period, and secondly because he is young, and young kids seem to have a greater chance of the illness being acute rather than chronic.
ITP is a horrible, worrying, and annoying illness. But having lived with my son's ITP for a year now, I know thats all it is. Its not going to kill him, it doesn't really affect his life in a major way, and I don't let it panic me any more. My son lived fine with 0-20K platelets for a six month period, and he continues to live happily with a count of between 15-100K now - I think he sits most of the time around 30-40K. I continue to have confidence that it will disappear by itself at some point.
I read that you are a fellow Australian and thought that I would let you know that each Tuesday evening at 7.30 pm Australian Eastern Standard time, a group of Aussies have a chat in the chatroom of the PDSA. Although, we are all adults with ITP we may be able to give you input on our experiences with the different ITP treatments. You are most welcome!
Thanks, Ali and Vanessa. I'll certainly have a look at that chat - very interesting.
Ali, it's good to know that even with a very low count, your child has been not majorly affected. That's what i'm concerned about - I wonder though what other treatments are available if he needs it if steroids don't work (so far) and Intragram is only when he's actively bleeding. Like some of the posts I've read here, I guess it just takes time.
Thank you for making me feel welcome and giving me good advice
That would be great if you are able to join us. Just thought I would add that in order to the join the chat you need to be logged into the site. You can find the chatroom once logged in by going to the option of "Join The Community" at the top of the page, and clicking on "Chatroom" in the drop down box. In order to see the chat you need to type something - strange, but we have learnt this from experience! It may look like there is no one chatting , but it only shows on you screen when you begin to chat.
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