From mum's perspective: My daughter's eczema history and my views on Topical Steroids

Here is one final post from my mum's perspective. It is all about my eczema history and her view of topical steroids which might help parents with young children who have eczema especially. I found it hard to read as it brought up certain unpleasant memories. I really hope that one day the treatment of eczema is changed because it is simply not working and only causing other problems like TSA.

Big hugs
Cara xxx


In my mum's words:
I think Cara’s eczema started when she was just over 6 months old. I remember she had a small patch of dry skin on her wrist and I mentioned it at the baby clinic. I was told that it looked like eczema and that I should take her to the doctor. I did and hydrocortisone was prescribed for her. I read the label and was reluctant to use it, but I did, and more patches came up all over her body. That was the start of years of doctor and hospital appointments and countless prescriptions for various strengths of topical steroids in cream and ointment form with some containing antibiotic and antifungal agents. I also had a cupboard full of emollients and products to use in the bath. 

At the time, I was told eczema was incurable, so joined the National Eczema Society. I bought the NES Christmas cards every year and sold stickers in Brent Cross with my mum helping to raise money for research, hoping that a cure would be found because seeing my daughter so uncomfortable was heart-breaking. After her bath, I would use the prescribed creams and emollients and her skin would come up red and angry. I did what I was supposed to be doing, but it didn’t seem right to me. I was told that she mustn’t scratch because she could be open to infection and that it thins the skin, so bought cotton all-in-one pyjamas with covered hands and feet that I found out about from the National Eczema Society. They were very expensive – I think about £25 each. She only wore them for a very short time because it was like seeing the person you love itchy in a straightjacket – torture.

I applied topical steroids only when absolutely necessary and very sparingly and Cara’s skin was not too bad during the latter part of her time at primary school. She was very happy and loved school. 

When Cara started secondary school, her skin became really bad again. She was extremely unhappy at school and started to have regular appointments with a dermatologist at the hospital. I would go with her before school and I have to say that it was a very unpleasant experience. The doctors we saw would get very irritated that her skin wasn’t improving and said that we were not using the prescribed creams correctly. One doctor was so bad I told him that Cara was being bullied at school and didn’t need to be bullied by him too. He apologised and said that because she was so stressed it was probably making her skin worse. There was a ray of sunshine at the hospital in the form of a nurse who had eczema. She gave Cara some good tips and really understood what it was like to live with a skin condition. 

Cara’s skin became so bad in her mid-teens that she was prescribed oral steroids. I think it was a three-month course and she had to carry a card with her for a year after saying that she had taken them. I really didn’t want her to take them and felt that she was pushed into it to some degree. Cara also took a lot of antibiotics during her teens because her skin became infected regularly.

Looking back, I think I know what may have caused a reaction in Cara’s skin at 6 months old, but of course I can’t be certain. I breastfed Cara for 14 months in total but started to give her cow’s milk at 6 months and I think her skin was reacting to that. With hindsight, and everything I know now, I would have stopped giving her cow’s milk and left the small patch of ‘eczema’ alone.

My thoughts on topical steroid withdrawal:
It should never get to the point where TSW is required. I think topical steroids are over-prescribed and you can also buy them over the counter. It says on the leaflet to only use them for a short time and under the close supervision of a doctor. If statistics are anything to go by, how can that ever be monitored? People have to study/work/look after children etc. and are caught in a cycle of using topical steroids in order to function while building up another skin condition along with other problems that will come to a head sooner or later. I don’t know what the answer is, and have no medical training whatsoever, but feel that when skin becomes inflamed, it is an indication that something isn’t working properly on the inside.