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A mother and child’s perspective on long term eczema

Date: 18 September 2017

Category: Childhood Eczema

Daniel didn’t have eczema when he was new born – it only started when he was three, starting like a rash with dry patches under his chin. Within three months, it was all over his body and he developed a cough.

Daniel and his mother, Emma, told us about their experience with the condition.

Emma: Our GP prescribed steroid cream and although the doctor didn’t seem concerned about the cough, it later emerged that Daniel also had asthma and he has multiple food allergies. The steroid cream helped, but things were bad enough for us to be referred to the dermatology department at Alder Hey and we settled into a pattern of sticking with their prescriptions and seeing the team there each year.

Daniel: I remember going to the hospital to have steroid bandages put on when I was about three or four. I remember it hurting a bit but I wasn’t aware of it causing me real problems then.

Mostly the treatment has consisted of steroid creams and treatments to cause temporary delay of the eczema. When I was about eight they asked me to go on to an immunosuppressant drug but at that age the side-effects seemed too extreme so I didn’t stay on it at that stage.

Emma: We still wanted to find alternative solutions and we got some useful support from a traditional Chinese medicine practitioner when Daniel was about eight. These consultations were with Alder Hey’s blessing; they understood that we wanted to explore the possibility of long-term solutions without steroids.  

The ages of 11 and 12 were quite good years but as Daniel approached 13 the eczema seemed to get much worse. People know that eczema can be a serious skin condition but I wonder how many people realise just how much it disrupts a child’s life?

During the bad phase approaching the age of 13, Daniel lost a lot of time at school. Sleeplessness because of the itching had always been a problem since he was little (we used to resort to a dose of anti-histamine) and here it was again, wearing him out and leaving him too tired to function at school or enjoy life with his friends. There were other factors at school, too: severe eczema can make your skin very hot and Dan is also highly sensitive to things in the school environment such as wood and MDF particles in the design/tech area.

Daniel: What I’ve disliked the most is having to go for so many hospital appointments. They were very frequent at times. What has been good is the way my school has helped me. They have understood the condition, and let me use a room to put my own creams on when I need to. They recognise that I can look after the eczema and they let me get on with it.

Emma: The disruption hasn’t only affected Daniel. With Dan’s needs I was limited to working part-time. Family days out were often cut short if Dan became too hot or itchy to stay out. Inevitably, with so much attention focussed on Dan’s needs there was sometimes tension between him and his older brother. It’s tricky in ways I never imagined.

As he approached 13, the dermatology team asked Daniel consider going on to methotrexate. At first he was reluctant but at a later appointment, when he was very fed up with the impact of the eczema on his life, the team talked it through with him again and he decided to give it a go. Things are going well on methotrexate and life is better all round for him now.

Daniel: Methotrexate’s been great. It’s made a huge difference to my skin. It’s less painful, it’s less itchy and there’s very little eczema visible on my body now. I’m going to keep taking that and the dermatology team will review about a year from now.

Emma: I have been impressed with the dermatology team at Alder Hey. They have been very open and informative about the treatments – we know there isn’t a cure – and have encouraged Daniel to make his own informed decisions. They have given us clear information and explained the potential side effects of treatments. We have even had psychological support, so important for us as a family. With the team’s help, we are doing well.

Daniel: I had one long-term doctor for several years and about a year ago I got a new doctor. Some of them have different views about what the best treatment is at different times but they have all tried their best to help me with the condition.

I’ve also seen a specialist nurse there – she’s part of the team and provides the same kinds of things as the doctors but she talks to me more and helps me to put on the bandages and other practical things that keep the eczema under control.

My parents have probably help me the most with my eczema. They were determined that we should try everything to try and solve the problem.

My advice to anyone else living with long term eczema would be to try the different medications you are offered – there’s probably something there that can help you manage it. Try everything and don’t give up!

  • Summary:

    Daniel's eczema started when he was three. Within months, it was all over his body. Daniel and his mother share their experience of the condition.

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Awesome article and thanks for sharing your experience. My daughter has had a very similar journey and we are at the point where internal immunosuppresant meds are our next option. I'm so glad they are working for you.

Christine Delgado

10:42 AM, 29 December 2017

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