Down in the mouth

No matter how long it took, or who I had to fight, I'd make my son better...

Published by: Laura Hinton
Published on: 26th May 2011

Parents – we’re superheroes to our kids, aren’t we? Whatever problem comes along, we take care of it. When my son Lachlan, six, fell over, I’d whip out a plaster. If someone upset him, I’d give him a cuddle. Nightmares? I’d check under the bed to scare away those monsters.
Problems solved.
But when he’d woken up about a month ago with swollen, puffy lips, I hadn’t known what to do.
‘Perhaps it’s an allergic reaction,’ my mum Maria, 55, had suggested.
But Lachlan hadn’t eaten anything unusual or different.
Within 24 hours, his lips had begun to crack and formed yellow, weeping sores.
‘Mummy, it hurts to swallow,’ he’d sobbed when he tried eating his favourite tuna. Instead, I’d had to feed him a little milkshake – it was all he could do to sip a couple of mouthfuls.
I’d taken him to hospital, but they’d just said it was a virus.
‘Give him Calpol and it should clear up,’ the doctor had told me.
But a week later, it was worse, not better. I opened his curtains one morning and was horrified by what I saw.
‘Mummy,’ he whispered hoarsely. As he spoke, the sores on his lips split open and blood and pus oozed down his chin on to his pillow. It was just like someone had put my poor boy’s lips through a shredder.
And his eyes, they were so bloodshot – what was happening to him?! A virus gave you a temperature, a runny nose and headaches, but could it really cause this? Thick, creamy pus was stuck to his teeth and caked his tongue.
‘It’s okay,’ I soothed, hiding the fear in my voice. Then I went to find Kevin and told him to call an ambulance.
On the inside I was panicking, but on the outside I appeared calm. I didn’t want my little boy thinking he was in any danger. After all, mums are there to protect and reassure, aren’t they?
As we waited, I cuddled Lachlan, mopping the trickling blood from his mouth with tissues. ‘You’re very brave,’ I soothed, stroking his brown hair.
‘It-it hurts,’ he croaked, trying not to move his lips because more cracks would appear.
‘The doctor will make you better,’ I said.
But at the hospital I was told again that it was a nasty virus. ‘Have you seen the state of his mouth?’ I fumed. ‘He can barely speak!”
‘Try Calpol and he’ll be fine,’ I was told again by the doctor.
Over the next few days, the sores in and around Lachlan’s mouth grew so bad, I had to feed him medicine through a syringe.
‘You’re the bravest boy in the whole world,’ I whispered.
But poor Lachlan couldn’t reply, his whole mouth too painful. Suddenly, Kevin had an idea.
‘I’ll buy a whiteboard, then you can write what you want, and we can wipe it clean afterwards,’ he told Lachlan.
Our little boy nodded, gamely trying to smile. I don’t know how the poor mite had the energy even for that. He was only eating yoghurt, and hadn’t been to school for a few weeks. Every morning, I was stripping back his blood and pus-drenched bed sheets so I could wash them.
As I pushed the syringe through his blistered lips, he tugged at his ears to try distracting himself from the pain. But still he scrunched up his red eyes in agony.
‘There we go,’ I shushed. ‘It’ll all be better soon.’
He grabbed his pen. Thanks Mummy, he wrote on his board.
Bless him, if only I could make him better, then I’d really deserve thanks. My only hope was the doctor could.
When his mouth was still weeping pus and blood six months later later, doctors agreed to run some tests.
Still, even after taking an untold number of swabs, they were no closer to an answer.
Yet every time they probed deeper into his raw mouth, I felt a pang of guilt – Why, when Lachlan needed me most, couldn’t I make things better?
For the next month, he was in and out of hospital.
‘I’m so proud of you,’ I said to him one day, as a nurse scraped some sticky pus from his swollen lip for testing.
As she left, Lachlan reached for his whiteboard. I’m sorry Mummy, he scribbled, looking up at me with big, bloodshot, blue eyes.
‘Lachlan,’ I gasped. ‘This isn’t your fault, darling.’ The poor mite, thought he was in the wrong.
‘You’ve got nothing to be sorry for,’ I assured him. ‘No one’s angry or upset with you, we’re trying to make you better.’
I want to get better, Mummy, he wrote. It hurts.
‘I’ll do everything I can to make that happen,’ I promised.
Of course, I tried to keep my word. Every spare moment I used to scour the internet in the hope of finding an answer.
‘Come to bed,’ Kevin begged every night. ‘You need to get some rest so you can be strong for Lachlan.’
‘But I’m supposed to have all the answers,’ I sighed. ‘I just have to help him.’
‘You’re doing everything you can,’ he smiled. ‘Lachlan knows that.’
But six weeks, eight months, three years went by without a diagnosis. Sometimes his mouth would clear up for no reason and we’d all be full of hope… then it would return just as suddenly and randomly.
Poor Lachlan missed months of school and lost 1½st in weight because he could hardly eat. Opening his mouth more than a little was too painful for him.
Yet just when I’d almost given up hope, I finally got an appointment with a specialist dermatologist I’d been pushing to see. Maybe Lachlan would finally get his wish to be better.
‘Do you have any ideas what it might be?’ I asked.
‘We think it’s a condition called Stevens-Johnson syndrome,’ the doctor replied. ‘It’s an allergic reaction that can be caused by a number of things, but normally it’s a reaction to medicine.’
So we’d never be really sure what had triggered it, then. ‘C-can you treat it?’ I worried.
She broke into a smile and nodded. Yes! Finally my boy was on the way to recovery, after three long years. I couldn’t wait to tell him what I’d found out.
The minute I got home, I broke the news to him. ‘You’re going to be better soon!’
His eyes lit up as he scribbled on his whiteboard, Thank you, Mummy. I was sure I could see a hint of a smile on his cracked lips, too.
Over the past year, Lachlan’s been on a cocktail of steroids, and his lips have slowly healed.
We don’t know if he’ll need more treatment in the future, or whether it might return. But for now, he’s smiling again.
They say mums are superheroes to their kids and I finally came to Lachlan’s rescue. But no superhero is complete without their brave sidekick, and my boy’s the best a mum could have.
Kelly Smyth, 34, Bristol, Gloucestershire