Sunday, 15 January 2012

Who emails a Hematologist at 347am.....? Me.

Max has ITP

I = idiopathic (meaning 'of unknown cause). Sometimes the 'I' stands for 'immune' as findings show that ITP patients have autoimmune antibodies in their blood.

T = thrombocytopenia (Meaning 'decreased number of platelets')
*platelets form clots that stop bleeding

P= purpura ('purpura' refers to the purplish, reddish skin rash, caused by the leakage of blood from broken capillaries into the skin)

It's been niggling me for awhile that we hadn't seen the last of Mr ITP. There's been an even more annoying niggle, that it wasn't even ITP to begin with. I think his actual diagnosis was/is 'Refractory ITP- by exclusion'. Meaning, that every other test, had ruled out every other illness that they could think of. The term 'refractory' means 'we have no idea how to treat this stubborn kid and his stubborn platelets' (don't quote me).


It's rare for a person to have a spontaneous bleed, when they have ITP. Max did.

There's a few things that have never quite added up about the diagnosis of ITP. Firstly, it is extremely rare in babies his age. Secondly, ITP normally occurs after a virus of some sort and he never had a virus.

It's been debated whether his immune system was activated by his vaccinations. But they were given 4 weeks prior, so it's a long shot.

There's also been longstanding 'issues' with his neutrophils. 'Issues' that I wasn't even aware of until we had an appointment with a different Hematologist. I thought that his neutrophils were wiped by his treatment but nooooo. The treatment actually knocked out, some shady characters called B cells and T cells.

His neutrophils have been inexplicably low for months. They've fluctuated between "ok but could be better" and "any lower and he'd be hospitalized".

This could possibly mean-
(a) Nothing
(b) He has a different illness, that's even more rare.
(c) Cancer of some sort
(d) Who the hell knows?

His most recent blood test, showed that the B cells and T cells are recovering, but his platelets have dropped. They aren't low, but the drop was big.

The whole scenario leaves me with some kinda unnerving questions that no one can answer. Why was he so damn hard to treat? Why did he even have a condition so rare in babies? How was his immune system activated in the first place? How sure are you that he had ITP?.

The niggles are moving closer towards the forefront of my mind and I sense that a Hematological storm may be brewing. I hope I'm wrong.

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