Fiona & James Griffiths
Mum Fiona Griffiths describes the vital role that nurses have played in the treatment of her son’s eczema.
It was the health visitor who told me ‘it’s just a little touch of eczema’. I spent the next hour crying.
I know lots of people have eczema and that most grow out of it but I’d had it severely as a child and still have it now so, for me, those few little words were devastating.
By the time he was five months old, James suffered constantly from the condition and the creams we were given just were not helping. That Easter he was on antihistamines which meant that all he did was sleep. Over the next few years I would frequently be in tears while he slept, desperate to do something.
By the age of two we’d seen a few dermatologists but his medication was never changed and each time we simply came away with another oral antibiotic.
After one particular appointment, a nurse from the clinic chased after me and told me about a specialist eczema nurse who she could arrange a meeting with if that’s what we wanted.
I’m so glad she did as the eczema nurse was brilliant! She spent a good few hours with us talking through everything that had happened so far in the treatment of James’ eczema and sharing snippets of information, reinforcing the obvious steps we should be taking (especially things I might not have considered or which I’d forgotten) and giving us a fresh outlook.
I never saw the nurse again who followed me out of the hospital but I owe her a huge debt of thanks for introducing us to this new source of support.
We tried lots of different things over the years but nothing seemed to make any difference. We saw a dietician and tried a dairy free diet but skin tests would eventually show that he didn’t have a dairy allergy – another dead end.
The tests also showed that he didn’t react to dust which was great from the point of view of not feeling that it was our fault because we couldn’t keep the house constantly dust free but, on the other hand, it was frustrating as it was another potential cause that had been struck off the list which meant there was yet one more thing that we couldn’t control that would have improved his symptoms.
The stress of his eczema meant that James’ wee body was constantly battling to heal itself while at the same time being more susceptible to other illnesses as a result.
I couldn’t take him and his little sister out for the day as he was always too tired having been scratching throughout the night resulting in a severe lack of sleep. On reflection, it was a vicious circle.
When our next referral came through it was with an eczema nurse in a different town to the one we had seen previously. Again, she was sympathetic and listened to and acknowledged everything I had to say and agreed that something had to be done.
Having noted everything we’d tried so far she gave us new creams to try but, when we returned for our next appointment, it was clear that these had not helped and I was disillusioned once more.
The eczema nurse would tell me when to book the next appointment for and I would head to reception where the receptionist would sigh and look at the diary, which was already full to bursting. Sometimes they would double book me in the hope of a cancellation!
My initial hopefulness was rapidly waning as we seemed to be getting nowhere, only ruling out cream after cream through trial and error. Sometimes his skin wasn’t too bad but it was only really the stronger steroids that worked.
At every appointment the nurse listened intently to my concerns and frustrations. She never lacked ideas and positivity and never gave up on us. She knew that there was no quick fix for James and that working our way through the different creams was a vital part of his care.
18 months ago, when James started school, and under the influence of a cocktail of creams his skin was finally ‘ok’. Moreover, as time has passed his skin has become quite clear and his face feels soft, softer than it ever has before.
He’s also full of life and boundless energy – like a normal six year old should be. He has become more confident too.
James recently saw an old photo in an album, a photo that had been ‘touched up’ to minimise the appearance of his eczema. ‘I don’t like myself there’ he said. That led to a very interesting conversation as he has no idea just how bad his skin used to be.
I will be brave at some point and show him how his skin looked for the first few years of his life but, at the moment, I am simply grateful that it is now so good.