Is ITP now over?

My 2 yr old was diagnosed with ITP 21/01/14. His scores have been mainly at the beginning under 10 (1at diagnosis) they lifted to the following 63, 147, 62, 32 and then 229. His consultant has now declared it over on one test and refuses to test him again unless he shows symptoms of bleeding. He only shows a few leg bruises at a count of 1 and his big bruises appeared after diagnosis from injuries. So I think it will be pretty low before I'd notice again. I'm wondering if I should go to GP and ask for a FBC in a few weeks or just wait and do something if I spot any signs. Any advice would be welcome - thanks.

6 Replies

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  • I wouldn't wait. I would go to GP in a few weeks and get FBC done which is what I do. As you know such a simple test but will be absolute relief for you.

    Good luck

  • Hi Mum, It may well be over but if you are concerned ask your GP if you can have regular blood count checks for a few months. It may never come back but I relapsed 10 years after I was declared clear so anything is possible. I think you should just keep monitoring it for a while. I go every 6 months, my counts are usually around 15-25 but last check went up to 38 with no meds (yay). I may never go back to the 200s or so but I check myself regularly for black bruises and the little rash , petechia , those are my tell tale signs. I get normal blue or green bruises, I am the clumsiest person to have this condition lol. I really hope he is free of it now, and has a hassle free childhood through to adulthood. Good luck

    Sheila

  • You can always get a 2nd opinion. My son was 4 when he got his first episode then it went for a full 12 months and appeared again and again and now 6 months without anything. My team told me i Knew him best and gave me an ongoing test to have in case I felt it was warranted. Its ok to push and go with our gut..nothing is "normal " with itp it does as it pleases..I Have had it for 16 years and can vouch for that ;-) Nobody wants to have their child stabbed with needles constantly so you dont ask lightly Its nice to be in a watch and wait position but am sure if you explain to your gp they will help you out

  • Hi I was right down to 0-1 when i was diagnosed but now after nearly 2 years I'm up to 147! But I will have a blood test in 6 months, unless any changes, I think the trick is to carry on as before, but you will know, we all know our children. good luck with it all xx

  • To update. My son was ill last week so took him to GP for diagnosis, she asked about his two bruises on back of his thighs and as I couldn't explain them felt a FBC was needed. A count of 46 was found.

  • My understanding is that children 'get better' from ITP much more often than adults do. My ITP was picked up when I first fell pregnant. My 'normal' count is between 15&20 platelets per unit, but after lots of trips to the hospital over about four years, they (with some prompting from me) decided to discharge me back into the care of my GP. I just wear a medic alert bracelet that says I'm a 'bleeding disorder'.

    Also I can go for a FBC at GP whenever I have a concern, examples; when I woke up with blood in my mouth (7) when I had a completely blood shot eye (red fresh blood) for over a week (went to hospital with that & they said its only a worry if vision is impaired or strong pain) and if I have a sudden &/or exceptional headache.

    Otherwise I just carry on as normal but avoid playing full contact rugby or other such 'physical' past times!

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