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Luka's story

16th January 2015

It was just after New Year when three-year-old Luka became ill. It started with irritability and a high temperature but quickly progressed from there. Mum Paula, from Richmond in Yorkshire, picks up their story

Luka's story

“It was just after New Year and the children were still off school.

I’d taken them with me to the health clinic to get my six-month-old son weighed. Luka was being quite irritable and when I felt his forehead he seemed to have a temperature.

I took him to see his GP, who diagnosed a virus and gave him some painkillers and I was told to bring him back should he worsen. As the day progressed he seemed sleepy and despite the painkillers his temperature wasn’t going down. It had been snowing outside but even with the windows open and Luka just wearing a vest he was still hot to touch.

He was also very blotchy, a rash was appearing over his body, but it wasn’t the typical purple rash associated with meningitis.

It was near midnight by then, but I rang the GP and was told to bring him to the out-of-hours surgery five miles away. With a niece who had suffered meningitis two years previously, it was always in the back of my mind to be extra cautious."

Told to let him ‘sleep it off’

“When I took him to the GP she took a look at him, didn’t take his temperature and told me to buy some calomine lotion, because she thinks he had chicken pox!

I did query the fact the rash was spreading way too fast for chicken pox, but was told it was definitely viral. I actually mentioned I was concerned it was meningitis and was told it wasn’t and to let him "sleep it off.

That morning I raced to the chemist to buy calomine lotion, but no chicken pox blisters appeared. Luka became more sleepy and began to be sick. He was reluctant to be touched and when he was awake he was crying.

Feeling helpless and knowing this was not chicken pox, I tried to remove his vest as he was soaked. That’s when I saw the purple spot, the one every parent dreads to see!

I rang the doctor straight away (they were at the top of the hill so I figured they would get here before an ambulance). It took 35 minutes and two frantic calls for the doctor to arrive and he took one look at Luka, gave him a shot of Penicillin and rang 999!"

Grey and hallucinating

“By the time the ambulance came Luka was grey and hallucinating. He was sick again in the back of the ambulance and hearing the sirens made me realise just how poorly he really was.

I remember getting agitated with the paramedic because he kept gently shaking Luka when he looked like he was going to sleep. I just thought the poor boy is being sick and so poorly, why are you not letting him rest? He later told me he was stopping Luka from becoming unconscious.

My son was so poorly by the time they reached the hospital they didn’t bother with a lumbar puncture - they immediately treated him with antibiotics for meningitis.

He was critical for the next 24 hours and I have never been so scared. Luka was very lucky. Within 48 hours he was sitting up in bed and although he was still very poorly for the next 10 days he made a rapid recovery. Although not a full one, as the years since have proved."

Topsy-turvy memory

“Despite taking Luka to see a paediatrician after both myself and his nursery expressed concerns about his memory and the fact everything seemed to be topsy-turvy (front door became back door, turn light off meant turn it on) I was told I was worrying about nothing.

Luka is now 10, has pretty extreme learning difficulties and his ability to retain information has been affected by meningitis. He is a lovely boy and copes well despite his problems. I know he was one of the lucky ones, but it has taken a lot of research and shouting to get people to sit up and realise that meningitis can affect children's learning and ability to cope with things.

The rash that Luka first had was apparently so rare that the consultant dealing with Luka at the hospital had only seen it once in her career. It still should be a factor in the signs for meningitis.

I would also like to add that, apart from one follow- up appointment, Luka was discharged, with no hearing tests or further checks. It was down to me to get him help when his hearing and speech became slow. I’d advise any parent who knows their child is really poorly, but is being told to let them rest, to shout louder. You know your child better than any medic!

I was put in contact with Meningitis Now after discovering the Mosaic report. Since then, I have had the regional support officer come out and visit me and Luka with a factsheet. Speaking to him and having him confirm my doubts that I was not being heard at school, made it a lot easier to go in with information. We now have an excellent plan made up for Luka's learning."