Eczema is one of the commonest childhood conditions. It is a long-term condition but one that will often improve over time for a lot of children. However, for Evie and her family it is a much more serious problem and a daily battle to keep it under control and alleviate her symptoms. Evie’s mum Sarah tells us her story:
Evie was born nine weeks prematurely weighing just 2lbs 5oz and spent the first two months of her life in neonatal intensive care. Sadly her twin brother, Arthur, didn’t survive the birth. While she was in hospital, there were no signs that she had problems with her breathing or her skin. It wasn’t until we were able to bring her home when she was a few months old that she started to develop eczema and it escalated very quickly.
When she was about six months old we started using emollients, a daily moisturising treatment, on her though it didn’t seem to have much effect. We also restricted her diet to see if that would help alleviate the symptoms.
When she was a year old she had her first anaphylactic reaction. Her older sister Maisie was eating peanut butter, something Evie had never had, and suddenly Evie’s eyes started to swell shut. We rushed her to A&E and it was only en route that I made the connection between the reaction and the peanut butter. It was very frightening, her eyes were so swollen she couldn’t see. Evie had blood tests which confirmed that she had a peanut and egg allergy so we removed those from her diet. We really hoped this might improve her eczema but it just carried on getting progressively worse.
By the time she was two she was often in wet wraps day and night. Then we noticed that she was developing hives all over body every morning after breakfast. We decided to take her for skin prick tests which showed that she was also allergic to wheat and diary. Once that was out of her diet, her eczema did finally get better. That was such a relief because the eczema was so horrific; really angry, red and itchy.
Research is so important because otherwise you don’t move anywhere. On a very basic level it also gives you hope
Before we knew what she was allergic to, the thing my husband and I found soul destroying was that we simply didn’t know what was causing the eczema and we couldn’t stop it. We felt helpless. We always found the eczema the most difficult, physically and emotionally, of all her conditions. I could see her scratching all the time and she’d bleed. We were constantly trying to stop the itching because it was so uncomfortable for her and it stopped her sleeping. At night I’d sew gloves onto her bandages as otherwise she’d take them off to scratch.
In the end it was so bad she had to wear this outfit to nursery too. She hated it. It made her different from the other children. I remember crying because I’d take her clothes off and she looked like she’d been burnt.
Being different to other children
I think Evie was 4 when she realised she was different to other children. It was a big decision to make her aware that she had these life threatening allergies. It was important though because she was going to school and they had to be hypersensitive to the potential dangers. She had to understand she couldn’t share food with other children. That was hard because it’s just another indication that she’s different and when you’re young you don’t want to be singled out.
Evie has four Epipens at school at all times and if there’s a school trip a teacher will take it. We are starting to teach her how to use it herself to prepare her as she gets older and moves to secondary school. We are also teaching Maisie as a precaution, she’ll be able to recognise the anaphylaxis and use the epipen confidently.
I worry about Evie’s confidence and how this holds her back socially. We have to be so careful and be with her so much. Even now she’s nine we still smother her in emollient cream. Every morning she has the preventer asthma inhaler and puts her creams on. In the evenings she baths in Oilatum and we put more emollient cream on her and then a special steroid cream on her hands. It’s quite a routine.
The importance of further research
We still see Professor Mukhopadhyay but I also take Evie to see an allergist in Southampton because we have a better chance of getting onto some clinical trials this way and I’m really keen this happens. If we don’t, I can’t see an end to this.
The only option Evie has to live the best life possible is to avoid things that cause her allergies but that’s a huge amount of things to be avoiding day in, day out. It’ll be very restricting. Research is so important because otherwise you don’t move anywhere. On a very basic level it also gives you hope; you just want it to succeed because it’s the only option for progression and a better future.