Cross Keys boy has to stop sport as the slightest knock could kill him
Updated 11:28am Thursday 19th June 2014 in News
A CROSS KEYS boy is living with an immune disorder which is potentially life-threatening. JEN MILLS talks to his family.
JACK MCINTYRE used to love judo. But the boy of eight from Cross Keys can't take part in his favourite pastime any longer - a condition developed two years ago means a knock to his head or abdomen could prove fatal.
Jack was diagnosed with rare immune disorder ITP, or Idiopathic thrombocytopenic purpura - an immune disorder which means the patient’s own body can attack the platelets needed to heal cuts and bruises.
It can develop after a virus or vaccination, charity the ITP Support Association says.
What would be a small cut or bruise for most of us could become a serious injury for Jack.
Just bouncing on his trampoline or going out on his bike is a risky activity, and his teachers at Waunfawr Primary School have had to be warned how to deal with the condition.
He can’t play football or rugby with the rest of the class and has to sit out PE lessons.
And if he gets a nose bleed or a cut, his parents have to take him to hospital if it doesn’t clot and start to heal within ten minutes.
Just four in every 100,000 children develop ITP each year, his father Andy McIntyre, 46, said.
The family were living in France just west of Morlaix when Jack was diagnosed with the condition.
His dad said: “He seemed to have a lot of bruises compared to his peers. So we went for a blood test to see what was wrong, then we went out for the day to the beach. When we came back at 8pm there was a note from the doctor pinned to the door saying ‘Contact me urgently, because Jack’s got a serious problem.'
“We phoned the doctor and were told we needed to take him to casualty because his platelet count was 4,000; you normally have 125,000 to 150,000 so it was very low. Overnight, Jack was given a drip and he spent three days in hospital while the paediatrician monitored him and watched his platelet level rise to 27,000 so he was out of the danger zone. He was then allowed to come home. Blood samples were sent to Paris for analysis and Jack had a bone marrow biopsy. He got the all-clear for all the ‘serious’ illnesses, much to the relief of everyone. The doctors then explained to us that, by process of elimination, Jack had ITP.”
Over several months Jack was in and out of hospital as the doctors tried new ways to keep his platelet count up, Mr McIntyre said.
But he added: “We decided, after consultation with a doctor, to stop his treatment because he was a bit like a pin cushion and it wasn’t doing anything different."
They now try to make his environment as safe as possible.
“The risk is of head injuries or stomach injuries where you can’t see the internal bleeding. When you have that, you can die from it”, Mr McIntyre said. “So we had to have an assessment for him to go to school. We have to buy special trousers so he can ride his bike - we don’t want to see him in bruises all the time.
“In France they have the pre-school booster. He had the injection straight into the muscle in June or July and it brought him out in little red dots, ‘purpura’. I suspect he already had (this condition) it in his system, but this progressed it further. Or it could have also been when he was home in the UK. In April that year he had the ‘slapped cheek’ virus. He was taken into hospital in July.”
Jack was fluent in French and the family had lots of friends in Brittany, but they decided to move back to Wales to have the strong support network of family around them.
His parents have to be vigilant of everything, Jack can't take part in the usual sibling rough and tumble with his four-year-old little sister Amélie, his parents have to watch him jumping on the trampoline or catching an illness like chicken pox, as with his immune system lowered due to medication it can be dangerous.
“We’re always saying, “Jack, you can only trampoline on your own; Jack, you can’t head the football!” He’s a normal eight-year-old,” Mr McIntyre said. “He’s supposed to tell us when he hurts himself and we’ve got cream we put on to stop the bruising spreading, but sometimes we ask him, “Where did you get that bruise?” and he doesn’t know. He would come out in a large bruise just from a small thing.
“He also suffers with fatigue. We did have to stop the athletics because that was two hours and he was absolutely shattered by the end. Concentration at school starts to become a factor and he can get emotional because he’s so tired. It’s a struggle for him, but also a struggle for the whole family although we’re stronger for it.
“At first we were scared; we didn’t know what was happening. Like a lot of people, we had never heard of ITP. The more we read on the internet, the more stories of catastrophes and things like that we were reading. But then we had hope reading about people that have recovered and been in remission.”
Jack, who is in year three at school, said he has had to explain to his friends they need to be careful: “I have to tell them not to bang into me. Some people listen. I explained it to them by telling them how bad it is, what happens if I get knocked.
“Platelets are like little squidgy things that stick together and when you have a bruise it clears it up. With ITP it feels terrible and sometimes it hurts. I feel blood running down, but inside. It feels funny.”
He said he misses playing football with the other pupils and “just normal stuff like that”.
The school has been understanding, Mr McIntyre said: “They use softer balls in PE."
The family will find out in around six months whether his current treatment is helping with the condition. The theory is that if his immune system is less active, his body may tolerate the platelets better.
“It can be a lifelong, manageable condition”, Mr McIntyre said.
“He’s had a course of treatment which lowers his immune system. It’s a trial medication but it could put him into total remission.”
Mr McIntyre is now raising money for the ITP Support Association and will be running the Cardiff Half Marathon in October.
* The ITP Support Association says that the disorder is termed chronic if it lasts longer than six months. Only one in four children with ITP will develop the chronic version of the condition, they said. As Jack was diagnosed in 2012, his condition is considered chronic.
Although many people recover from or live with ITP, it is a potentially fatal illness with brain haemorrhage after a knock to the head one of the most worrying risks.
When platelet count becomes very low, even day-to-day activities can become life threatening. ITP is not contagious.
The difference between ITP and haemophilia is that haemophilia is genetically inherited and permanent. ITP is not inherited and can go into remission.
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