For Sheena Thompson, those stressful, harried months when her infant son Daniel’s eczema was at its peak still feel slightly unreal.
“It does seem like a bit of a bad dream,” the 41-year-old Inverness mother says. “But it was something that took over our lives for quite a long time.”
Daniel was just seven months old when a minor case of eczema grew into a rash that covered his entire body.
Several skin infections broke out that would turn Daniel’s skin red raw, including one serious case that required hospitalisation and antibiotics through a drip.
Mum Sheena and dad Simon were dragged into an unrelenting routine of moisturising Daniel’s skin and wrapping him in special bandages.
The wrappings, which looked liked little white tights, served a duel purpose – to keep the moisturiser and steroid gel treatments on Daniel’s skin, and to stop the baby scratching himself.
“We had to cover his hands to stop him from scratching until he bled so he couldn’t easily do the exploring babies usually do,” Sheena explains.
“I look back at photos when he was at his worst and it just breaks my heart. He looked so sore, and would even have bald patches where he had rubbed his hair away with the scratching.
She adds: “There’s a picture of him in that white bandage top and bottom they were like little tights, which were probably quite uncomfortable for him.
“And then it got to the summer. It’s quite uncomfortable when you’re itchy and you’re hot and in your little white tights.”
Full-time job to care for baby Daniel and his eczema outbreak
These were uncomfortable months for the whole family.
Sheena and Simon, who both work in the NHS, spent 60 minutes in the morning and 90 minutes at night applying the moisturiser and gels Daniel needed.
Sheena eventually extended her maternity leave to deal with Daniel’s care. Even when she returned to work, she could only manage part time.
“I couldn’t work at nine o’clock [in the morning] because it took that much time to get him ready,” she adds.
‘You want to do everything you can as a mum, but you are helpless’
At the same time, they had a toddler to look after — Daniel’s older sister Charlotte.
“It was tiring and looking back on it was a bit mental and stressful,” Sheena says. “My parents live locally so we relied on them a lot.”
On top of the stress was the concern about what the eczema was doing to Daniel.
When the skin infections forced him into hospital, he was fed antibiotics directly into his blood stream.
“It was scary,” says Sheena. “The cannulas [tubes] were going into his little veins, which were so small, and I’d get worried they would get dislodged.
“I was on a knife-edge over whether the treatments would work or not and whether the infection would get better.
“You want to do everything you can as a mum, but you are helpless. There’s only so much you can do.”
Toys covered in ointment and flakes of skin
There were other considerations. Daniel couldn’t go to the usual baby groups because he was in and out of hospital all the time.
Clothes that were bought for him eventually had to be thrown out because they were covered in ointment, while toys would be covered in flakes of skin.
“I hadn’t really appreciated how important skin is,” Sheena says of that time. “As soon as that gets broken down then there’s that risk of infection.
“I hadn’t realised how intense that regime you know could be of moisturising and how miserable people could be. It does sort of take over family life.”
How Eczema Outreach Support helped the Thompsons cope
Sheena remains indebted to Eczema Outreach Support, a Scottish charity that helps families across the UK. The group supported the Thompsons as they struggled to cope with Daniel’s condition.
“I didn’t know any other families that had children with eczema like this,” Sheena explains. “So it was just nice to know that you weren’t by yourself.”
Along with emotional support came a lot of practical help.
For instance, EOS supplied plastic toys that distracted Daniel from the scratching.
“Also, because they were plastic, you could just wipe them,” Sheena adds. “Things like that that you don’t think of because any furry toys just got covered in yuck.”
All grown up and clear of eczema
Daniel is now six and, despite an occasional minor breakout, clear of eczema.
“His GP, dermatology department and paediatric ward were great at providing care and trying new treatments,” Sheena says.
“But it was really good to have the support from other families with EOS so we felt less isolated. He is through the other side now and gets small patches and that is it, which is just amazing.
“There’s no big cream regimes now and he’s happy and healthy. He loves football, loves tennis, loves playing chess. He’s totally different from the little miserable baby that we had.”
CEO of EOS Suzi Holland says: “One in five children suffer from eczema and it can be severe, impacting every minute of a child’s day.”
To mark World Eczema Day last week, EOS has launched a series of animations to educate others on what eczema can feel like and how to help inflamed painful skin.
Suzi adds: “We are raising awareness of the condition as part of World Eczema Day and can’t wait to launch our animations and hopefully educate others on what children and young people can go through.”
