Fluctuating platelet counts

Hi,

I am the father of Tommy, diagnosed with ITP at 1.5 years, which is a bit over 2 years ago. After the initial shock & concerns (having a toddler learning to walk diagnosed with ITP is quite stressful), we have gotten used to it. Initially, we visited the hospital a few times after hard falls, but at one point our paediatrician told us that "we will know" when to go to A&E (ER), which I found very reassuring in some strange way. We now don't do anything special and allow him to do whatever is normal for a 3.5 year old including cycling, climbing things etc. We do tell everyone about his condition and carry around some medical articles just in case.

Tommy is not on any medication but has blood tests every few months to monitor the situation. Visual symptoms vary between none and excessive bruising/a bout of eczema; we can make reasonably accurate predictions of test outcomes based on how he looks. Not medicating based on platelet counts alone seems be standard practice in the UK and in-line with very recent recommendations in medical journals, so we are not too concerned there.

Which brings me to my question: platelet counts seem to vary quite wildly and apparently can jump up and down significantly in a few weeks. Is this normal? If it is, what is the point of testing every few months? Are they monitoring something else at the same time or just checking if he still has ITP?

Here's the full table of results

Many thanks,
Daniel

Hello Daniel,

I am also from the UK. My daughter is 4 and she was diagnosed nearly a year ago, although has had very bad bruisng ever since she was moving about so there seems to have been a problem for a long time.

I can't really help regarding fluctuating counts, all I can say is that my daughters doesn't seem to fluctuate much at all. Since being diagnosed her count has been anywhere between 13,000 and 21,000.

It is interesting to hear about another very young child who has had ITP for more than 6 months, as our haematologist for some reason thinks my daughters ITP will go very soon as children her age don't get chronic ITP (not sure why she thinks that!!)

I'm afraid your haematologist is probably misinformed or intentionally misinforms you to make you less concerned. I think Chronic ITP in kids is sufficiently rare for a doctor to say that, but I am surprised a haematologist would. Tommy is under treatment at the Paediatrics unit in Poole. Our Paediatrician has said from the start that about 20% are chronic.

Maybe it is worth talking to your GP about this and see if you can get referred to someone else? On the other hand, I wouldn't think it will make a difference treatment-wise.

In any case, it is very much worth reading up on ITP yourself. I found an excellent article (through this site), which gives a good (and recent) overview of diagnostic and treatment options, with separate sections for kids. It also has a section on emergency treatment, which we carry around in case we need it. You can download a copy for free.

bloodjournal.hematologylibrary.org/content/117/16/4190

Maybe give a copy to your haematologist

Hi Daniel

I am also from the UK and my son of 12 has had ITP for about 2 years. He has had both some periods where his count is static and low (all this year so far....) and some where his count bounced around all over the place. During the months that it was fluctuating, the bounces seemed to get progressively weaker - I think his counts were something like 10,130,15,100,10,60,17,40. I thought there was a distinct 4 weekly cycle at the time. From what I've been told, I think that the main point of formally monitoring the count is to build a scientific history of the disorder in the patient rather than anything else. I also sometimes take my son for a count when he is particularly bruised, but this is mostly to try and persuade him to slow down a bit.

I also let my son do pretty much anything thats normal for a 12 year old boy - with the exception of contact sports if his count is under 20 and the wilder rides at theme parks. Unfortunately he is a very sporty kid, and he is getting a bit frustrated with the situation as his count has mostly been under 20 all this year. For this reason, we are vaguely looking at treatment options for him.

I remember being told the 80% recovery figure. I believed it, but my son said from the outset that he was feeling unlucky about ITP - unfortunately he seems to have been right so far! I still believe that he will grow out of it though, and I hope that the same happens for your little boy.

Good luck, Ali

Thank you for the article Daniel. Like you I have been doing lots of research too, I think it is important too as the doctors don't seem to know much about ITP.

The first consultant we saw (not a haematologist) told us about the 20%, but I think our haematologist thinks that my daughter hasn't got chronic ITP because she has always bruised badly and so it didn't suddenly happen and it wasn't just after a virus, injection or illness of any sort. She thinks that it is coincidence that she has ITP at the moment and that there is probably an ongoing platlet function problem. To me it seems a big coincidence and I'm not convidenced. However, platelet function problems are pretty much all hereditory and I have realised that I actually have a lot of symptoms myself!

We've got an appointment coming up soon so we will see what they say this time. It will be interesting to see what her count is as well. It's always been between 13-21. She nearly always has well over 80 bruises, a lot of petechiae and cuts take a while to stop bleeding, but this week she scraped the back of her ankle and it took 1 1/2 days until it totally stopped bleeding (and it then started very slightly again 2 days later). To me that seems a little worrying and I wonder whether her count is even lower.

We also let our daughter do most things, although we don't let her on a trampoline with anyone else and she has to have a helmet on on bikes and scooters even if she is just in the garden. However she still seems to hit her head quite badly approximately once a month! I'm guessing as she gets older she won't do it as much.

Looks like we're lucky - fingers crossed. Another test next year.