Mum issues warning after son was diagnosed with rare condition 'similar to cold'

A mum has issued a warning after her son was diagnosed with a rare condition ‘similar to cold’.

Paula Jones’ ‘mother’s instinct’ kicked in when ten-year-old Toby’s bottom lip turned purple.

The little lad was ‘getting over a cold’ on 21 March when she spotted the unusual symptom, and the worry began to increase. Toby’s face began to swell, he was struggling to breath and had a high temperature.

After taking him to the GP, Paula was told to take him to the hospital immediately where it was clear it wasn’t just a cold that the Plymouth boy was suffering with.

Toby first had cold-like symptoms. (BPM Media)

Toby first had cold-like symptoms. (BPM Media)

The mum told Plymouth Live: “The doctor said if he gets worse on the way to Derriford Hospital, we’d need to pull over and call 999. It was at that point I realised how serious it was. I went into parent overdrive.

“I got to the hospital and within 20 minutes he had several specialists with him.”

“Any watery part of the body ulcerates”

He was diagnosed with the rare condition, Stevens-Johnson syndrome, which the NHS does say ‘presents itself as a cold or flu’ to begin with. But it is very serious and requires immediate hospital treatment.

“The body goes into overdrive, the immune system is attacking the body, but in the wrong way,” Paula added.

“It’s a one in a million condition – statistically. But Toby’s is even more rare because it was his own mycoplasma that caused it.”

Paula says that while Toby was at the High Dependency Unit at Derriford Hospital, she was told that doctors ‘did not know’ if he would make it.

It is a very rare condition. (BPM Media)

It is a very rare condition. (BPM Media)

But the lad ‘promised’ his mum he’d get through it and the fighter is now recovering at home after getting out of hospital on 2 April. And now the mum is warning other parents to trust their instincts after this scare.

Paula said: “We were in the children’s assessment unit, he was given oxygen as he was struggling to breathe. He came out in ulcerations, in his throat, mouth – any watery part of the body ulcerates with the condition.”

The mum added that the hospital consultant said her son’s recovery from the syndrome was the ‘most remarkable he’d ever seen’.

What is Stevens-Johnson syndrome?

While the condition can usually be caused by taking certain medicines, Toby’s reaction was caused by an immune response to his own mycoplasma – this is a bacteria which can infect different parts of your body.

It’s particularly some types of epilepsy medicines, antibiotics and anti-inflammatory painkillers that can cause Steven-Johnson syndrome.

In kids, it can sometimes be caused by infections like cold or flu, cold sores and glandular fever.

Typically, it will start with flu-like symptoms and then a rash will start to spread from the upper body to the face, arms, legs and other areas. It’s not usually itchy and you may also get blisters and sores on your lips and in your mouth and throat.

You should call 999 or visit A&E if you begin to present symptoms of Stevens-Johnson syndrome.

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