The more people know about eczema, the sooner we’ll find a cure.
If this is true, then I simply have to do what I can to raise awareness!
Our three-year-old has suffered from eczema since she was four months old, and it worsened dramatically from the age of eighteen months onwards. My partners also suffers – he only has the occasional flare up but when it happens, it send him bonkers it’s so uncomfortable.
As an adult, he can rationalise and urge himself not to scratch as he knows that this will be the beginning of an itch-scratch cycle which could be potentially very damaging. Even so, it’s difficult. He has to take himself somewhere quiet for a few moments and breathe deeply until the itch subsides.
For our three-year-old, this is as yet impossible for her. She’s very bright and does understand, but eczema currently covers her body, and once that itch starts, it’s own to us as parents to get on top of it as quickly as possible.
We’re used to it, but as I sit and write about our experiences, I realise the profound impact it has on family life. I also realise that I constantly worry about the effect on what should be a happy, carefree childhood for her.
Eczema – how dare you blight my beautiful daughter’s childhood?
My daughter turns three tomorrow – the 1st October and the first day of Eczema awareness month.
I’ve reflected a lot over the past few weeks after I decided to write this post and decided it may be helpful to write a few points on our famiily story, and what has helped or hindered us.
I have to add a slight disclaimer here in that I’m obviously not a health professional. I write purely about our experiences.
Relationship with health professionals
We’ve seen a lot of health profressionals over the past three years including GPs, nurses and dermatologists. The GPs we have seen have always been very kind and have taken the time to look at our daughter and assess her skin. However, it seems they are limited in what they can do for a child with severe eczema.
For those who aren’t familiar with eczema, the main basis of treatment is moisturisation, usually via emollient creams or ointments. This is coupled with steroid creams or ointments to deal with particularly bad patches which are red and inflamed. In addition, emollient-based bath and washing products can be prescribed.
We have found that the best GPs can do is try us on different types of these products. There are so many out there that I’ve felt like it’s a case of ‘simply pick one’ for them – excepting the steroids.
GPs are VERY reluctant to prescribe steroid creams or ointments for children, or even adults in the case of my partner. When we recently saw a private dermatologist – which I’ll explain further – he explained to us that this is due to a bit of media scaremongering around something called skin-thinning. We’ve all become terrified of steroid use due this – here’s some facts around steroid use and their potential effects from the National Eczema Association.
This leads me on to the fact that we were just not getting any progress through the medium of GPs alone. We were referred to a dermatologist.
We waited for a year. A year! Initially, we got an appointment through for four months hence. I thought this was long enough, and then it was cancelled no less than four times, with no explanation.
When we finally arrived at our appointment, it was not a pleasant experience. I realise completely that NHS health professionals are very busy people, but this didn’t go anyway to alleviating our distress at the way we were treated. We managed to see the consultant for four minutes. During this time he barely glanced at our daughter, snapped at me when I tripped over my words in my haste to try and say everything I wanted to say, and even then didn’t prescribe anything we hadn’t tried before. He did refer us to his clinic, led by specialist eczema nurses, so I was pleased that at least our daughter would be seen regularly (we’ve get to see the nurses – I hear they are very good).
Part of me thought that maybe this was it – we had tried everything we could and would just have to carry on trying to manage. But I also had that niggling doubt that more could be done. This is when we decided to pay for a private dermatologist consultation.
I support the NHS and feel sad that I have to say that our experience at Dr Tim Clayton’s clinic couldn’t have been more different. He sepnt a good fourty minutes with us. While we were there, our daughter was rolling up her sleeves and scratching them red raw. He could see that none of us were coping and that nothing had worked. As well as explaining to us the myths around steroids, he put us on a specific course of treatment which has so far been miraculous. I won’t go into too much detail (as it would take too long!) but it involves use of stronger steroids for short periods at a time, advice around emollient application and products for the bath and to use as a wash.
Most importantly, he had a good manner with children! He didn’t just glance at her as if she was some kind of annoyance to his busy day – he spent time engaging with her directly, asking about her birthday and the presents she would be getting.
He also wrote a letter to our GP asking for us to be referred to his NHS clinic, so we can see him on a regular basis. We couldn’t be happier with this outcome – but it’s been a long time in the making.
Dealing with the opinions of friends and family
I’ve lost count of the time someone has said to me “what about food – could it be related to that?”. Or have I tried olive oil, oats, coconut oil, cocoa butter…an endless list when I think about it!
This is obviously because friends and family want to help, particularly when they see a child in some obvious distress and discomfort. I’m open to any suggestions – you never know when a magic solution may be found!
I have had to often remind myself of this fact, however. Constant opinions and suggestions can become tiresome, particularly when you’ve tried that thing already (as an aside, we tried food elimination diets such as dairy and gluten free, but nothing made a difference).
For now, I’m sticking with the professionals, thanks!
I wish I could list a range of products that I have found helpful, here. Unfortunately, aside from the prescribed treatment I’ve mentioned above, there are only two I can recommend. These are:
QV Skincare – a new range of emollients which we recently tried. We mainly use our prescribed emollient (Epaderm ointment), but this is great as an additional tub/bottle to carry around with us. It has a really smooth application, left our daughter’s skin feeling very soft and reduced the itching.
Pure Potions Skin Salvation Ointment – a relative recommended this to us, and again this has been really handy to keep with us at all times, with small enough tubs to keep in my bag. It was developed by a mother who’s daughter suffered like ours and I really recommend it as a natural product which again helps to reduce the itch when we out and about.
Don’t let it beat you down!
Finally – the impact on family life is enormous before you know it. Keep your chin up – as support can be found! I can’t write too much here, simply because I start getting tearful and also don’t want to share too much of the emotional pain my family has been through. Those of you who have children with eczema will know what I’m talking about here. Keep plugging away at every professional who’s prepared to listen – you’ll get there.
Would you like to share your eczema story? Would you like to hold a fundraiser? Share some education materials? Find out about the many ways you can get involved by visiting the National Eczema Association.
I hope that every family who is going through troubled times with eczema receives the care and support they deserve.