Eczema Awareness Month: Our family story

20130919-192749.jpg

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?

20130919-192812.jpg

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!

Products

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.

20130919-192801.jpg

 

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.

 

 

expressionconfession

Working Mum of two, living in Didsbury, Manchester, in a house which breeds washing, mushed up raisins and various toys in the brightest primary colours. Oh, and the odd empty wine glass.

27 thoughts to “Eczema Awareness Month: Our family story”

  1. aw what a brill informative post. it must be heartbreaking to have to see her in discomfort and i admire how patient you have been with the NHS and the cancelled appointments situation. im so sorry if i’ve spoke out of turn with mentioning products to try etc…if anyone mentions what’s worked for them, you always come to mind so i pass it on but i understand it must be frustrating knowing you have tried everything x

    1. Thank you! No of course no need to apologise re mentioning stuff – I was trying to get across that it’s hard not to feel exasperated but I’ve got to remember that everyone does it out of kindness. And also- you never know when that something might be a miracle! xx

  2. A very interesting post. Both myself and my husband have eczema and so I’m expecting there’s a good chance our little one may suffer from it when he/she arrives, as we’ve been told it runs in families. It must be heartbreaking to see her in so much discomfort. Happy Birthday to her too x

  3. So sad – when my daughter’s eczema flared it made me cry and I wished I had it instead – please try the black seed oil it worked like a miracle for my daughter x

  4. I suffered badly as a child and relied heavily on Savlon – now my skin is so much better as an adult, unless I am stressed! Winter is always the worst sending your daughter lots of cuddles xx

  5. Such an interesting amd important post. Really proud frim several people suffering in my family so will pass this on 🙂
    Ive just found you on bloglovin i can’t wait to read more. 🙂

  6. I suffered eczema terribly on my hands and feet (it was a specific type which only affected hands and feet and whilst hideous, painful and ugly I was always grateful that it was never anywhere else on my body) from the age of about 9 through to 23 – my last big outbreak was right at the start of my teaching career and it was crippling as I couldn’t move my hands, but then it just seemed to stop. The skin on my hands is weakened and sensitive from years of steroid creams and I know there is always a chance of a flare but but I think as an adult i was lucky enoguh to discover treatments that worked (Aveeno on a daily basis and a steroid cream so strong it can only be use for 3 days at a time) and things which aggravate it – (being sweaty, strong cleaning products, rubber gloves) so my eczema is under control but I always fear a relapse!
    My son was under the dermatologist by 10 months because his skin was so bad but again we seem to have got it under control – again with the use of Aveeno. I can’t rate that stuff highly engouh.
    I hope your little lady grows out of this and doesn’t have to suffer for too long x

  7. Thank you for this post! My daughter has eczema and I have tried all sorts. I may try a private specialist like you did if she flares up again, this summer was awful!

  8. Such an informative post, and great that you managed to find someone willing and able to help. Supportive health professionals really are worth their weight in gold! I see a friend’s daughter (just over a yr old) every now and again when she has a eczema flare up & I give her Reiki, it usually clears in a few days, I was as amazed as they were in the difference in her skin after just one 30 min session. I thought it would take far more than that! But as with everything, I think you have to listen to all the advice you’re given and see what feels right, it looks like you’re on the right path! 🙂 x

  9. Great post. My son is 11 and has suffered his whole life. The general prescription treatments used to clear his flare ups within days. However, His inner elbows have been inflamed for over a year now, with periods of easing and periods of being infected and weeping. We have tried a combination of things, but nothing seems to clear these particular patches properly. It’s heartbreaking.

  10. Eczema has affected our family for years along with asthma. Thankfully we’ve managed to keep it under control with alternative medicines. Sounds like you went through the mill but I’m glad you found the right person to help. Thank you for linking to PoCoLo x

  11. My dad and my cousins suffer from eczema and I’ve seen how horrible it can be to live with. It makes me so sad that the NHS is failing small children like this. I don’t know if they are just over worked but we were referred to a different department for something and when we got there they didn’t even know why I was there! We also went private after that and the difference was amazing.

  12. I can relate to every word of this! My son’s started at 6 months and it really is like fighting a forest fire. And about foods…The allergist had us withdraw all milk, dairy and wheat and eggs for 6 months with no improvement. The poking test and blood test (so sad to see his reaction) were inconclusive. The best they could conclude is it may or may not be a combination of factors and stress definitely causes flare ups.
    I remember the exhaustion and frustration. At a 2 year old check up we asked if a mild tranquilizer was a possibility (haha) cause he would wake up 5 times a night itching. We did everything we were told and still couldn’t make him complete comfortable:(
    He finally – in between 5 to 6 years old – improved enough to sleep through most nights. Now at 9 years old, We still need to use Eucerin after baths and in between baths too sometimes and hydrocortisone occasionally on some spots. But it’s better and flare ups are fewer. (Although I know when he’s nervous when he starts itching) He hasn’t had any skin infections in at least 3 years:) Hopefully improvement with age is common so that all parents and kids affected by this can see a light at the end of the tunnel.
    Eczema has shaped him and all of us…positively and negatively…but a cure is really what we need. Eczema is torture and because of infection risk…dangerous…our babies deserve a cure.
    Thank you for writing this. I loved it and I hope your daughter’s eczema improves like my son’s did.

  13. My eczema (along with intestinal problems and hayfever ….all inflammatory/immunologic diseases like eczema) has disappeared after avoiding not only bovine (cow) dairy products but also beef (cow) meet. Excluding either dairy or beef alone did not help me. So my hypothesis is that – at least to me – cow protein is the trigger. Took me a while to learn how to avoid beef as it’s an ingredient (major or minor) in many sausages and minced meats so now I make sure to check or simply avoid minced meats.

  14. Thanks for sharing your story. I’m a mother with to kids who has lived with eczema since their were babies – you can follow our days with treatment on www. sosken.blogspot.com ( Norwegain )

  15. So sad that you had to go private to find a great guy, and that you had to wait a year in nthe first place – whcih is sadly nothing unusual for the length of wait for support in our area either. Great informative post, found you through Steph’s blog hop x

Leave a Reply