Would like to hear from other parents (UK)

[kp06]

My daughter was diagnosed with ITP in August last year, when she was 3. Her platelets were nearly always in single figures until April when they went up to 41, but when we had her tested again last week they had dropped to 24. The haemotologist said not to be too disheartened, it was positive she had remained in double figures but I have noticed more petichae over the past couple of days so I can't help thinking her platelet count hasn't gone up.

How do other parents manage with children who have ITP, and what have been your experiences when it lasted more than 6 months?

I'm completely grateful that she doens't have a more serious condition and that she goes to a great nursery where the staff have been so supportive and they have an action plan for her. I find that one hand it's all I think about and on the other hand I can't be bothered to talk about it because we're just playing a waiting game, constantly hoping she'll get better.

This has ended up a bit more rambling than I intended!

[malc]

Hi,

Our son was diagnosed when he was 2.5 yrs old and had platelets in single digits (down to 1). He had steroids briefly but they lost their effectiveness rapidly so we stopped. No other drugs. His count remained under 10 for about 2 years and then went up to 40 ish and then 110 by itself within 2-3 months. We thought that was the end of the ITP but then it dropped back to under 20 for another year! Then back up again and his last count was over 400 and not seen any bruising or petechiae for the last year. Fingers crossed it won't come back but we are always aware of the signs now and so is he.

What I am trying to say is that keep your hopes up as if the count has increased once then it can do so again. In terms of coping then we just made sure that the nursery/school was fully aware and that they had to call us if he had any falls/bumps/bleeds or they were worried. We tried to let him have as normal a life as possible but watched him more closely than his siblings! We did find that although we always thought about it the thoughts tended to move to the back of our minds the longer it went on. We monitored new bruising and petechiae as these were sure signs his count had dropped. We reduced blood tests to every 3 and then 6 months as we decided we didn't want to treat anyway so no need to cause him the trauma of more regular tests. We could tell when count was low or better from the bruising.

We found other people didn't really get it and gave them updates if asked but otherwise left it at that.

Hope this helps in some way.

Good luck with everything,

Malcolm

[kp06 in reply to malc]

Thanks Malcom that is very helpful. I had been considering asking at her next appointment if we can reduce the frequency of her tests as there seems to be so little point in them when, like you say, you can tell by looking at her whether it's a good day or a bad day so I'm relieved to hear that is a strategy you went for.

I often think the whole is tougher on her 5 year old brother than it is on her given that all he wants to do is wrestle!

[AnthonyHeard Administrator ITP Support Association]

There is a very helpful article on Childhood ITP on our website itpsupport.org.uk written by Dr John Grainger one of the leading experts in Childhood ITP. Please do have a look at it if you have not already checked it out.

[kp06 in reply to AnthonyHeard]

Thanks. I have read the article - the ITP support association are great.