Date: 18 September 2017
Category: Childhood Eczema
Ellie’s eczema appeared when she was about six weeks and at first it only affected her face. At six months she was treated for meningitis with massive doses of antibiotics. After this, the eczema spread much more widely. Ellie had another severe bacterial infection at 18 months with - of course – more antibiotics, and from that point the eczema got a lot worse.
Ellie’s eczema is severe. Although her hands and feet aren’t affected, it covers the rest of her body from neck to ankles. Like some other affected children, she also gets solar urticaria and has to stay covered up when she goes outdoors.
Initially Ellie’s GP prescribed emollients and mild steroids but the eczema didn’t respond to those and she was referred to a dermatologist. Up until the age of three she was prescribed cyclosporine, which we then weaned her off. For us, the turning point came when we had the first contact with our excellent eczema specialist nurse. She taught us how to apply and use the various treatments: wet wrapping, sprays and emollients. This makes all the difference.
We feel lucky to live in an area where Ellie is treated by a wonderful multi-disciplinary paediatric dermatology team. We consult with all three staff together and when prescribing they always take care to ensure I understand what’s involved and know what to do. I can contact the eczema nurse direct with concerns or queries. These things together built my confidence to the point where I felt I could set up an eczema support group via Facebook, sharing tips with other families. We now have 1,300 members!
Getting Ellie established in her reception year at school took a lot of collaborative planning between the hospital team, the school and ourselves. It’s been complicated and certainly tough going for Ellie but she has had a great year. You can read more about this and other aspects of life with severe eczema in my blog entries.
One great thing that has emerged from all this experience is our discovery of mindfulness and meditation. Looking for a way to help Ellie drop off to sleep – and get back to sleep during the night – we started using meditation as a wind-down technique and it works well for her. In fact, I’ve now started teaching meditation to other children, some as young as three. This isn’t a magic solution to Ellie’s sleep problems; we still have wakeful nights where a cool bath or a distracting activity is the only way to go, but it’s a key part of our armoury.
Our family is very aware that there is no cure for Ellie’s eczema. We work with clinical advice, Ellie’s school and the providers of outside activities that she wants to do, to keep things under control and balanced so that she continues – despite the tough challenges she faces - to enjoy a full and happy life.
Kate blogs about her young daughter's experience of living with severe eczema, the support group she set up and how mindfulness and meditation have helped.