ITP recovery

[Cali46]

I know every case is different but I am really struggling with anxiety/stressing about DC (5yo) recovery from ITP.

• How frequently did you attend for bloodtests & for how long?

• Did you find that platelets increased in a linear fashion or did you have ups & downs but still recovered?

• At what platelet level did you notice/find the bruising/petechiae stopped?

• At what level did you restart sports/PE etc?

DC is climbing the walls with being restricted - had to stop football/karate & also very clumsy/rough so we are having to restrict PE/park/playtime as they cant be ‘trusted’
Under investigation for ADHD & physical exercise is a really big part of managing this, so it is doing no one any favours not being able to exercise as normal, I am just obviously very concerned this could go on long term & we can’t carry on like this forever. Hospital tell me ‘until
platelets are back to normal’ which is no help. I feel like soon we may need to start accepting risk as mental health starts to decline.

• How long did recovery take for you? The one child I know personally became chronic so not a good stick to measure against 🫠

• We had a really good increase in Mondays results but this week I feel like the bruising is back with a vengeance & noticed bleeding gums last night which we never had even when platelets were at their lowest!
  Did you sometimes find that there was an apparent increase in bruising without a corresponding decrease in platelet count?

Its very difficult to try & not give in to my urge of full body checking/scanning & pass my anxiety on to DC!

Thanks in advance :)

I can’t answer all your questions as I honestly can’t remember however my son had this a couple of years ago when he was 6. It hasn’t reoccurred and was just a one off, he had a few blood tests afterwards & platelets all went back to normal - I think within weeks tbh.
Easier said than done but try not to worry about it being chronic just yet. I was making myself sick with worry but all went completely back to normal - he still remembers getting the blood tests & a horrible nose bleed that wouldn’t stop (I actually took him to A&E due to him having a red spotty rash! They were so low) but he was fine very shortly after & no lasting affects.
Bloods aren’t nice though - pack of sweeties afterwards for being a brave boy was my go to!

My daughter was diagnosed in January last year at the age of 5. Initially we were having weekly blood tests (nightmare!) but then went to every 2 weeks and then quite quickly to every 3 months. Her platelets have bounced between 6 at their lowest and I think the highest was in the 80s. We have no rhyme or reason as to when they are particularly low that we've noticed. They said she couldn't go to school at all when her platelets were less than 10, and had to have inside play time at school if they were between 10 and 30. But of course, I have no way of knowing what they are on a daily basis!
As a general rule they've said no contact sports, climbing, any sports where she's going to be at risk of a ball to the head, and no riding a bike. We've also got TXA to take as an emergency medicine if she gets badly injured, before she can get to hospital.
We are hoping she will eventually grow out of it, but it's seeming less likely as time goes on.

How long has your son had it for? It's so very stressful, I'm sorry it's happened to you too x

We are only 2 weeks in from a diagnosis 🫠 so a long way to go yet! Platelets at diagnosis were 10, 29 last week, 40 today.

I feel quite deflated today as although things are moving in the right direction, in the back of my mind I was expecting a bigger increase, instead of being glad it’s increasing, I’m in the mindset of surely it should have doubled!

Is it until platelets are 150 that you’ve been advised re the contact sports/bike riding etc?

If its any consolation my friends daughter had severe ITP and it took 2 years for her platelets to get over 20!! However soon after that they increased back to normal & have stayed that way ever since.

As I say a big part of our behaviour management etc is physical exercise and we genuinely can’t carry on like this with no end in sight!

I’m just spiralling a bit at the moment and in a very negative mindset ☹️

It must be really hard if you have a very active child. My understanding from doing lots of reading and speaking to her team is that a big bleed or head injury is much less likely to happen if the platelets are over 30. How often are they doing bloods at the moment? The vast majority of children recover in the first few months so I really hope that's the case for you guys, especially as it seems to be steadily increasing 🤞🏻
I totally understand it's a really daunting diagnosis and you're still very much in the early stages of learning about it, so let yourself feel all the feelings. I'm much calmer as time goes on, it's just our new normal now x

I had ITP in my early 20s. The treatment then was very large doses of prednisone, platelet transfusions. A year in hospital if and on. Ultimately they tagged my blood with some sort of countable marker and discovered my spleen was destroying my platelets in minutes. So spleen was removed and I was cured. However a spleen turns out to be really useful.. so hopefully there are more choices now. That said. I’m 67 now and never had any further blood issues. Just have to be careful of bacteria infections.

My son had this at age 10. He was treated with IVIG as his platelets were literally zero. He was bleeding from nose and mouth at the time, and blood was pooling at his ankles.

After the IVIG his platelets soared to 450 then went back down to about 20. After that there was a slow and steady increase. He had blood tests every month iirc and each one was slightly better. Once his platelets hit 50 he had no restrictions except contact sports.

He got his first platelets count in normal range exactly a year after his first episode. This was 8 years ago now and to date, no recurrence - we were told a 20 percent chance of that. Btw we think it was a flu vaccine that caused the ITP. Symptoms began 7 days after it.

My daughter first appeared with ITP at the age of 9 after having a really bad virus. She was completely well in herself but developed a “meningitis type rash” which scared me to death. We took her to hospital and she was initially treated for meningitis to be on the safe side but later the same day we were told they were pretty certain it was ITP, which we had never heard of. Her platelets were 14 at the time and within a week to two, they were back up to normal. She wasn't poorly at all during this time. We were told in 99% of cases it wouldn’t return. It was very scary and we wrapped her in cotton wool!
Lo and behold, it recurred every year for 4 years afterwards, each time after a nasty virus and each time the rash got less and less. She only had blood tests when the rash was present and had to stay away from any sporting activity, which suited her as she hated PE!
She’s now 17 and hasn’t had ITP for about 4 years, so I do think she has grown out of it or is in some kind of remission. We’ve been told it may never come back again but then again it could, such as during pregnancy. She is fully prepared for it and knows the signs and what to do if it presents again.
Everyone’s case is different but I hope our experience helps in some way. Best of luck to your son.

Also just to add, she didn’t need any treatment or intervention as her body fought it and her blood platelets returned to normal within 1-2 weeks each time.