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My son was so ill he couldn’t drink water – doctors sent us home
‘It’s Hand, Foot and Mouth disease,’ said a hospital doctor, confidently.
‘That’s what you thought last time, but you were wrong,’ I insisted.
It was December 2025 and I’d brought my five-year-old son, Mylo, to hospital after discovering blisters around and inside his mouth.
I was terrified; I knew it was serious.
But despite me sharing my fears that Mylo was seriously ill, the doctors wouldn’t believe me.
I broke down in tears of frustration. I knew my son, and I knew there was something very wrong.
But they sent us home.
It started in November 2024 when Mylo woke up with blisters on his hands and mouth. The doctor thought it looked like Hand, Foot and Mouth disease – a common childhood illness – and advised paracetamol, Ibuprofen, and fluids.
The following day, though, Mylo’s eyes were swollen and the blisters in his mouth were so sore he wouldn’t drink, so I took him to hospital.
Mylo was admitted for three nights (they thought it was Hand, Foot and Mouth with a ‘super infection’ known as Gingivostomatitis), and given IV fluids and antiviral medication.
He seemed to improve; but as soon as we got home, his lips and eyes swelled back up, so he was re-admitted.
This time, one doctor told me she thought he had Stevens-Johnson Syndrome.
‘Do not Google it,’ she said, emphatically.
Of course, I went straight online – and gasped.
It’s a serious skin disorder; and that one cause for children can be cold- or flu-like infections.
Doctors said the best they could do was make Mylo comfortable and let the condition run its course.
He was seen by the eye doctors every day because, they said, the severe inflammation could lead to scarring, corneal damage, inward-turning eyelashes – and, at worst, even blindness.
It didn’t bear thinking about.
It was horrific. I was so scared but tried to keep upbeat when I was with Mylo and only broke down in tears when I left the room. I didn’t want to show him how worried I was.
After five days, the swelling went down and we could take him home.
Fast forward 13 months – and in December 2025, Mylo was off school with a cough and cold.
Five days later, I noticed a blister on his lip. ‘I don’t like the look of that,’ I said to my partner, Chris, who reminded me that the doctors had suggested a recurrence was very unlikely. But within an hour, I noticed another blister inside Mylo’s mouth.
That was it. A horrible sense of déjà vu hit me.
We took Mylo to hospital; and that’s when I broke down in tears of frustration when the doctors insisted we go home.
‘This just isn’t right,’ I thought, desperately, as we drove away. Sure enough, Mylo’s temperature spiked that night; so, yet again, back to the hospital we went.
This time, I wasn’t taking no for an answer.
Luckily, doctors finally saw how unwell Mylo was and he was admitted.
This time was much worse than the last. It was all utterly terrifying and my head was spinning.
Mylo tested positive for chickenpox, which doctors thought might have triggered the recurrence. His lips swelled and blistered so much that he couldn’t even drink water through a straw.
He couldn’t speak because of the blisters in his mouth, so our interactions were limited to nods or thumbs-up
The swelling and blisters covered his eyes and genitals.
Chris and I stayed with him, as he was on morphine and with a nasal NG tube, which went through his nose and into his stomach to give him liquid food, and I held a bowl under his mouth to catch the drool that was pouring out. He couldn’t speak because of the blisters in his mouth, so our interactions were limited to nods or thumbs-up.
This time he was diagnosed with RIME, Reactive Infectious Mucocutaneous Eruption, which closely mimics Stevens-Johnson syndrome and is usually triggered by an infection. These doctors couldn’t be sure, but they suspected Mylo had probably had RIME the year before, too.
Doctors were talking about putting him to sleep and cutting away the dead skin tissue because he had so much of it in his mouth and he didn’t seem to be improving. I was terrified.
They didn’t need to do this in the end, though, because after six days, we started to notice a small improvement at last. Mylo started drinking liquids through a straw.
A few days later, Mylo came home.
He was still covered in lesions and we had to use a little sponge to clean the debris from his lips, as well as give him steroids for his eyes until January; and we’ve had to go back to the hospital for monitoring every week.
We’re due to see a Paediatric Consultant in April for genetic testing, which could show if Mylo carries certain genes potentially making him more susceptible to this condition.
For now, Mylo’s back to normal – obsessed with playing football, and back at school with his mates. He hasn’t had any lasting damage.
But we have no clear answers about if or when this reaction might return. We’re giving him vitamins to support his immune system, to hopefully help to protect him against future viruses and infections, but we’re left living in a world of uncertainty, unsure if even a minor cold could trigger it again – which, for the average five-year-old, is very hard to avoid!
But, while I’m nervous about Mylo being ill again, he needs to live his life. I would love to keep him at home and protect him but it’s not possible or practical – and we’re grateful to have our happy, healthy boy back.
When I look back at the pictures, it’s hard to believe how poorly Mylo was; but he was incredibly unwell, and I’m so thankful I kept pushing, taking him to the hospital again and again.
Now, I’m urging other parents to know they should always trust their instincts – because no one knows your child better than you.
I was sent home repeatedly, but I knew there was something wrong; and, as much as I wish it wasn’t the case, I was right.
As told to Rachel Tompkins
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