Liz blamed her son's rash on washing powder - in fact, he was at risk of bleeding to death

By Liz Vercoe

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'Mum, would you look at this.’

It was first thing one morning in the school holidays and my 17-year-old son Adam was sitting on the side of his bed holding up his feet for me to inspect.

Both were covered in dark maroon spots, each about a millimetre across, arranged like a pair of ankle socks.

Scare: Liz Vercoe with her son Adam, who was sure there nothing wrong with him

Scare: Liz Vercoe with her son Adam, who was sure there nothing wrong with him

I tentatively pressed some: when spots don’t whiten or disappear under pressure they can be a symptom of meningitis. They didn’t budge.

Terrified that it was meningitis, I looked up at his face. But he looked and felt, he reassured me, fine, just tired.

Little could we imagine that by midnight he’d be admitted to hospital in danger of a life-threatening brain haemorrhage or instant blindness.

But it wasn’t meningitis. Instead, Adam was suffering from something that occurs equally frequently: ITP or immune thrombocytopenic purpura, a blood disorder caused by a faulty autoimmune reaction.

Looking at his feet that morning, though, I’d thought perhaps he was allergic to something I’d washed his socks in. 

 

But why just the socks? A hurried visit to the GP reassured us it wasn’t meningitis. Off went a blood sample for analysis, just in case, but otherwise all seemed normal.

But at about 6.30 that evening Adam went to the youth charity where he volunteers. And although he had noticed the spots were now up his shins, he still felt totally healthy.

He’d been gone about 90 minutes when we were phoned by the out-of-hours doctor who’d been sent the blood test results.

Her message was clear and frightening: ‘I’d like to send an ambulance for your son — now.’

He had, she said, an extraordinarily low blood platelet count — these are the cells needed to ‘plug’ any bleeding until the blood can clot.

A healthy number would be 150 to 400; Adam’s result was three, she told me. 

It took more than a week for Adam's platelet count to rise properly and he was liberated when it reached 27 - with a carrier bag of medicines

It took more than a week for Adam's platelet count to rise properly and he was liberated when it reached 27 - with a carrier bag of medicines

My heart lurched. She said he’d be safer in an ambulance because with so few blood platelets he was in danger of spontaneous internal bleeding.

Telling your child over the phone that there’s nothing to worry about but to sit down until an ambulance arrives is not easy.

But Adam just said he was sure there’d been some mistake.

His father and I dashed to Charing Cross Hospital A&E, West London, and, barely an hour after the doctor called, his ambulance crept slowly and carefully up to the door, having been instructed not to jolt him about.

Adam stepped out with a slightly puzzled look on his face.

‘I’m fine,’ he protested, adding that he’d felt reassured by the absence of screeching tyres and sirens.

However, above his elbow was a 4in-wide, deep-purple band where the blood pressure cuff put on him had inflated, causing massive bruising.

And the spots had spread, covering the palms of his hands, his thighs and — what frightened me even more — they were breaking out as black dots on his tongue.

Fortunately, Adam took the view it was all a fuss about not much at all, based on the fact he didn’t feel the slightest bit ill.

'Looking at his (Adam's) feet that morning, I'd thought perhaps he was allergic to something I'd washed his socks in,' said Liz (file picture)

'Looking at his (Adam's) feet that morning, I'd thought perhaps he was allergic to something I'd washed his socks in,' said Liz (file picture)

But another blood test showed his platelet count was now just two, and the doctor, having thoroughly checked him over, prescribed a giant 90mg dose of steroids to dampen down his immune system and gave him a leaflet on ITP.

She explained she was pretty sure that for some unknown reason his own body was attacking his blood platelets.

ITP has been called idiopathic (unknown reason) thrombocytopenic (too few blood platelets) purpura (rash of little blood blisters), although it is now referred to as immune thrombocytopenic purpura as it is known to be an auto-immune disease.

At 11.30pm it was decided to admit Adam to nearby Hammersmith Hospital’s haematology unit.

Another snail’s pace ambulance ride later, he was surrounded by the very best of the NHS.

Adam would be staying put, he was told, until they got the platelets up to at least 20. That’s the level at which he’d be safe from a bleed in general day-to-day activities.

But by the time he was put in the ambulance, his count was too low to measure.

The collection of tiny bleeds looking like a rash is the visible symptom of the immune system’s antibodies attacking perfectly healthy blood platelets.

‘The body’s own immune system speeds up removal of these abnormal platelets,’ explains Adrian Newland, professor of haematology at Queen Mary, University of London.

WARNING SIGNS

  •  A pinprick rash that looks a bit like heat rash. This can spread and become a bigger rash of purply/red flat spots that do not go white or disappear when you press them. Does not feel sore or itchy.
  • Bruising either spontaneously or very easily. Carrying a bag or wearing a tight seatbelt can cause a bruise.
  • Prolonged (20 minutes) nose-bleeds and/or bleeding gums.
  • Heavy prolonged periods in girls/ women.
  • Blood in the stools.
  • Unexplained tiredness. A low platelet count is often accompanied by extreme tiredness.
  • Sometimes ITP is first noticed in a routine blood test, particularly in adults.

‘Without enough platelets — ie, less than a count of ten — a sudden blow or movement can lead to internal bleeding, blindness or a stroke.

The presence of blood blisters in the mouth is an indicator that serious internal bleeding is imminent.’

Babies and children quite often get a mild bout of ITP after a vaccination or illness, as a result of the immune system being activated, but generally the attack stops by itself and the platelet level returns to normal in a few months.

The majority of teens, certainly those aged up to 16, with ITP following an illness or vaccination also recover for good.

But Adam, at 17 and with no known cause, was harder to categorise.

In the UK there are about 4,000 cases of ITP a year and for 80 per cent of adults the low platelets become a life-long chronic condition.

‘However for 40 per cent of these, the platelet level, although low, remains high enough to never require treatment,’ adds Professor Newland, ‘and only in 5 per cent will the condition be severe or life-threatening.

‘Fortunately, deaths from brain haemorrhage or undetected internal bleeding are rare.’

The hunt for the trigger to Adam’s autoimmune attack was like an episode of TV’s House (fans will understand) only without the medical team breaking into our home and looking for a cause.

Over the next 24 hours he was tested for lymphoma, lupus, hepatitis, and for the stomach ulcer-inducing bacteria Helicobacter pylori.

He was like a pin cushion. He was X-rayed and scanned. He’d had no recent vaccinations. It’s still a mystery.

Meanwhile, Adam was prescribed more steroids and other medication to prevent bleeding, plus omeprazole and calcium to counteract the increase in stomach acid and reduced bone calcium caused by the steroids.

And slowly, five worrying days later, the platelet count started to increase.

It took more than a week for the count to rise properly and Adam was liberated when it reached 27 — with a carrier bag of medicines.

The spots and bruises took three weeks or so to fade and over the next couple of months he was very gradually weaned off the steroids.

Cutting down too fast could have triggered another attack of ITP.

The good news is that after a year of normal platelet counts it suggests it was a one-off attack. Eighteen months on, it’s so far so good, although

Adam says his stomach lurches whenever he sees something that looks like a purple spot on his skin. 


For information, leaflets and advice see the ITP Support Association: itpsupport.org.uk

 

The comments below have not been moderated.

I think your son had a lucky escape. I went to my local A&E; two years ago presented with the same symptoms including bleeding in the gums & the blood blisters and had to wait for 6 hours before they called me in. My platelet count was as low as 3 and when I told the doctor that I have ITP (TP) he didn't even know what it is, he had to look it up, phone other doctors in the hospital & then decided to keep me in. I stayed in the hospital for 2 weeks and was discharged on Xmas eve. Whilst I was there, I felt like a guinea pig because they didn't seem to know what they were doing and they just put me on different treatments to see which one works better. So I'm glad your son got that kind of response from the doctors, and glad to hear there still some good doctors out there.

Click to rate     Rating   7

I am in my 40s and have 4 auto-immune diseases ITP being one them. I had my first experience 6 months ago when my platelets dropped to 3. When you bleed and it doesn't stop it can be very scary especially when you have no idea what is happening. I have had a relapse since but as I knew the warning signs (rash, bruising, blood blisters in the mouth) I was able to get help quickly without worrying. I was very impressed with the NHS helpline 111. I spoke to an operator who then got a doctor to return my call within minutes. The doctor spoke to my local A&E;, there was a fax waiting at reception when I arrived and I went straight through to a ward, no waiting in A&E.; I am now being weaned off the steroids as my blood platelets have gone gone back up (side effects worse than ITP hate them!) and hoping it doesn't come back again. But if it does I will be calling 111. I wish you well Adam and thank you for sharing your story. Maj

Click to rate     Rating   2

Good god. A positive story about the NHS in the DM. Guess a lot of your readers will have to have a lie down now

Click to rate     Rating   22

I'm an adult with ITP. I was diagnosed 7 years ago with a count of 4. I've had counts of 1 and 2 many times and always just gone back to work after the blood test so I agree that the hospital for this young man, especially with the ambulance and so on, was a bit OTT. I hope the story doesn't scare too many people who get a diagnosis of ITP in the future.

Click to rate     Rating   8

My son was diagnosed with itp when he was 11 months old, never once was I told he could go blind. The hospitals actions I feel we're ott and must have been scary for all concerned. My son is now 15 and has moved from acute itp to chronic itp. He knows his limits and knows when to be careful. It's all about lifestyle. Anybody with this condition can lead a normal active life, it doesn't always mean panic stations when the platelets drop low.

Click to rate     Rating   12

"The Challenge of Homeopathy" by Dr. Margery Blackie, former physician to Queen Elizabeth: (page 174) comments on a child with purpura:" It was good enough then. "He was bleeding from everywhere - the nose, mouth, bladder, bowell and was bruised from head to foot. He was given Crotalus horridus (rattle snake) and he did very well indeed." Proof is in the pudding , or 'evidence based medicine' in the old days , which is all they had , frankly.

Click to rate     Rating   1

So good to have awareness of this disease on the rise. I was diagnosed in May 2012 with a count of 2, steroids didn't do anything to raise my platelets all summer long and eventually I got a transfusion of IVIG and and currently I am holding my own with no treatment intervention and a count of 118 on my last test. All cases are individual and the haematology team who look after me in Oxford are second to none.

Click to rate     Rating   1

Jon Miller- In response to your comment about scaremongering:- I suffer from ITP and have done for many months a nose bleed which lasts for 3 hours and runs like a tap being turned on is obviously a problem as we can only afford to loose so much blood!! Without steroids I would continue to bleed so the comment no drugs are needed might work for some however ITP is serious and should never be ignored!!!

Click to rate     Rating   2

My sister got this after the German Measles vaccination (so I was never jabbed) - its a known risk, something like 1in 250000 so quite high. You are never considered completely cured of it and have to be permanently watchful.

Click to rate     Rating   8

My son had ITP 16 years ago when he was 3. I was told that it usually follows an upper respiratory tract infection and the antibodies for the infection are like a key and the infection the lock. In ITP the infection "lock" is like the platelets and so the body keeps producing antibodies even after the infection is gone and these destroy the platelets. The body replaces the platelets, but then reaches a point where it says sod this and gives up produces something which is going to be destroyed. I was told this by an expert in the field as my son was treated at a large teaching hospital.

Click to rate     Rating   12

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