Platelet level of 1 (ITP)

[Concerned24]

My 6 year old nephew went to a&e today due to a non blanching rapidly spreading petechial rash and bleeding in his mouth and oral lesions.
They have said they think he has ITP and his platelet levels are 1.
He has to stay in hospital, and the hospital he is at are currently on the phone to Manchester children’s hospital (for advice I guess?)

I’m worried because I have no knowledge of this condition.
Will he be OK? He’s not feeling unwell in himself, although he has had a mild cough for a couple of weeks.

It is a dangerous thing as your cell walls break down (i think) (hence the bleeding).
I know someone who had a level of 12ish from ITP. She was given steroids for months and recovered fine. Years later she is still fine (has to have regular blood tests). It came on out of the blue and they said it was just from a random infection.
Sometimes steroids don't fix it, so they move to other options, eg spleen removal (you can live without your spleen but you have to - I think - go to A&E if you have a temperature).
Good luck to him. He is in the right place.

This might help OP x

www.alderhey.nhs.uk/wp-content/uploads/2023/06/Immune-Thrombocytopaenic-Purpura-ITP-Patient-Advice-Leaflet-PIAG-174.pdf

They kept him in overnight and started him on tranexamic acid. He went home yesterday after his platelet levels rose to 11.

Today he banged his head so had to go back to the ward. Blood tests have shown that his platelet levels are now at zero so he is staying in and having a blood transfusion. He has to have a CT scan of his brain first.

Yikes. Poor boy.

I hope your nephew is ok, OP.

How is he @Concerned24 ?

Hi there,
Interested to know how your nephew is doing? My 7 year old son was diagnosed at a very similar time to him and his platelet count was 2 at the time. They are only now at 14 after a boost of plasma helped but then they crashed again.
I hope he is ok.

My son also had platelets at 1 then zero. He was given intravenous immunoglobulin. It took a year for his levels to get fully back to normal but in the 7 years since he has not had a recurrence. Most recent platelets were 253.

Btw my son's symptoms were identical. Bleeding from mouth, oral lesion, rapidly spreading petechial rash and nose bleed.

DS had ITP when he was 2.5, it was a very stressful experience for us all. At one point his body was completely purple with bruising. He was in hospital for 6 days, had a platelet infusion and has been perfectly healthy ever since. No long term effects whatsoever. He is in his 20s now and is the picture of health.

I hope that's reassuring for anyone going through it now.