Anybody else had a child with acute ITP?

[FourArms]

DS2 was diagnosed with acute ITP last Sunday following a dose of chicken pox. His platelet count has varied between zero and 5,000. Currently it's 1,000. Consequently I'm a bag of nerves, especially since DH is away with work at the moment.

Just wondered if anybody else had had a child with this condition, and how it panned out. DS2 is currently happy as larry, and well over the chickenpox. Trying to get him to be still and play board games isn't working!

I haven't had one, but I was one. Also after chickenpox funnily enough. I had quite a stormy course, had steroids then immunoglobulins, then in the end a spelectomy. But the outcome was, as you can see, positive. I know it was a horrid time for my parents, though. Hugs.

Oh no! How have you found life without a spleen?

It's quite rare for it not to resolve spontaneously though, as I'm sure you've been told.

Life without a spleen has been uneventful, thank goodness. There are worse organs to live without.

That's good for you at least. I'm hoping we don't get anywhere near that scenario. DS2 hasn't yet received any treatment for the condition so there are still lots of options open to us.

Ds3 was diagnosed with ITP at 8 weeks old (he developed it 24hrs after his first Immunisations). We spent over 2 weeks in hospital and he went through a number of tests including a bone marrow biopsy. They thought it was something more sinister than ITP, so when he was finally diagnosed with it was sort of a relief, IFYSWIM.

His platelet count was up and down in hospital anything, from zero to 12,000. He had two courses of immunoglobulins and a platelet transfusion, which only brought them up to 13,000.

We have to go to the hospital every month for blood tests the last count was 38,000 I know it's a long way off the norm, but it's heading in the right direction. We are unsure if it's chronic or Acute ITP at the moment, it depends if he has it longer than 6mths which we should find out in April.

I completely understand how you feel, I was and still am a bag of nerves. He's now starting to roll around the floor and is trying to sit up unaided which I am petrified of in case he bumps himself

Sorry for not replying earlier. DS2 started some spontaneous bleeding from the mouth and nose on Thursday night, so he had an immunoglobulin transfusion and we spent the night in hospital on Friday. Then his D&V got much worse, so spent last night in there too. They repeated his bloods this morning, and the count is zero again

We've got to go back on Tue for more bloods, and then he's scheduled for a bone marrow biopsy on Wednesday after which they'll start the steroids.

I can imagine that the ITP diagnosis must have been a relief for you. Luckily in my case I wasn't all that worried about DS2 until the day before the diagnosis as the link between ITP and chickenpox is quite well documented.

38,000 sounds great! They've said if he gets to 20 they'll be pleased, and we're safe at around the 50 mark. It must be scary though as he starts to sit and stand. DS2 has never been one to fall over much, which is a relief, but he's still a very active 2 year old. In a way he's been easier to cope with (if much more clingy) whilst he's under the weather with D&V as he's much happier to sit still.

What was the biopsy like for your little one? They've said that DS2's will be done under a general anaesthetic, but are they uncomfortable afterwards?

Oh no what a worry, the hospital told us that when the platelets are below 20 it's more common for spontaneous bleeding, so we were happy when they went up to 38, but it has taken 4 mths to get there!

The bone marrow biopsy was not a pleasant experience for any of us, but not to terrible. I'm not sure where your DS is having his done but we were transferred to Birmingham Children's hospital. We had to go to the Oncology Department which was a huge shock, there were so many really sick children there having chemo etc, so just to fore warn you if you do have to go to Oncology. Although if your ds2 has D&V they may keep him away so the infection isn't spread.

DS3 had a general anesthetic too which was heartbreaking to watch , they allowed us to go into the theatre with him (which was just off the ward) and we stayed with him while he fell asleep. He was only in there about 15 mins (which seemed like an age) and the nurses made us tea and toast while we waited

They then called us in and we stayed with him until he came round, we could then hold him but obviously had to be careful of his back. He had a small dressing on the base of his back which came off the next day. He was a little uncomfortable for about 24hrs but he was given calpol so didn't seem to affected just a little unsettled.

I hope all goes well on wednesday, I will be thinking of you. Try not to worry too much, I'm sure he will be fine. Sorry I've gone on but I thought hearing about our experiance would help you a little, as we didn't have a clue what to expect.