Looking after a child with severe eczema can be exhausting for parents as well as the child. There’s so much to consider, environment, clothes, weather, treatments, financial implications – the list goes on. Sorrel Ronan faces a relentless battle every day to keep her son’s skin healthy and pain-free. She has kindly shared her story with the British Skin Foundation to help raise awareness of the impact the condition can have on both children and their families.
Jasper very clearly had dry skin since birth which was treated with olive oil as advised by health professionals. It wasn’t until around two months old that I noticed the coin sized patches were not going away, even after he moved on to stronger medications.
For four years we pretty much never detoured from the circle we were traveling around. Jasper’s eczema worsened so we went to the doctors. We’d be prescribed a new cream, the cream didn’t work and his skin became infected. Next we’d be prescribed antibiotics and wet wraps to treat the infection. Around and around we went… we were on first name basis with all the receptionists!
You name it, Jasper, now six years old, has tried every cream possible for his age. Creams that themselves have turned his skin red raw, stained the bedding and ruined clothes. And that’s just the prescribed treatments. I’ve spent hundreds over the years buying each and every ‘miracle’ cream and/or oil.
That’s the thing with eczema – someone always has a friend or family member who swears by a certain cream. There is so much out there that it’s very hard sifting through all of the ingredients to see which ones can actively help contain a flare up. The only respite he has ever experienced was one of the many times he was prescribed Prednisone.
Every single day we have to consider ‘How will what we are doing today affect Jasper’s skin?’
Can he play that game because he may get to hot? Who can he sit near in case strong scents irritate him? Will he sweat and scratch if he doesn’t get fresh air? Will an adult be watching him, and I mean really watching him so he wasn’t secretly scratching away his skin? Will there be a new trigger to add to the list? The mental checklist is never ending.
Starting school introduced a whole new batch of issues for Jasper and I believe the biggest one was how his eczema affected him emotionally. Children pointed and stared for a while, but I taught my son to explain that it was eczema and as children do, their minds moved on. The adults in the playground were a different story, with one man declaring in front of Jasper and I that his skin looked like road rash.
We see the dermatologist every three months or so. On his last visit Jasper’s skin was the best it’s ever been in his life. This is due to a combination of being moved on to Protopics, alongside me having two weeks off work so I could cream him almost hourly. It was also probably the sunniest two weeks he’s ever experienced, so shorts and sunshine helped.
As soon as the cold weather set in I began to see his skin worsen each day. Nothing I do prevents his skin from deteriorating. I’m currently saving up to buy a special washing machine, one I read about online as it helped another family with their child’s eczema. Her story is very similar to Jasper’s, down to him having a server house dust mite allergy.
As well as the pain that eczema causes Jasper, it also has a huge impact on us financially. I feel the guilt that comes with me being unable to afford private care for him, the air purifiers, DermaSilks and all of the fancy bedding. I buy cheap and often, I just throw bedding and uniforms away weekly.
Sometimes I feel guilty when I think it is just eczema and things could be so much worse… but then I’m angered when people who do not live with this daily refer to it as ‘just eczema’. Unfortunately, we are yet to find the ‘right’ combination of creams to help with his eczema, and as I’m told, he’ll probably grow out of it. But that does not help right now.
The best way I have found to explain life of being a parent of eczema is this; just visualise a character, usually a comical one, moving to fetch an item up from the floor, only to kick it further away each time. That is life with eczema.
At the British Skin Foundation we believe that research is the key to fighting skin disease. We’re the only UK charity dedicated to raising money for all types of skin disease, including eczema. Our unwavering commitment to funding quality research means we won’t stop until we’ve found cures for common skin problems like eczema and acne, through to potential killers like malignant melanoma. To date we’ve raised £15 million to fund projects since 1996. For more information about eczema, visit the British Skin Foundation here.
Are you caring for a child who has a skin condition? British Skin Foundation experts will be answering your questions in a unique one-day clinic on Wednesday 18th January. Submit questions from Monday 16th January – more information here.