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Baby eczema took over our life: have we found the answer?

"How come you have stopped blogging?", someone asked me recently. Short answer: I had a baby. Slightly longer answer: I had my third baby, my life is chaos, I got a job as a columnist and it's all I can do to get that done every week, I'm a perfectionist and it takes me ages to write anything, oh, and my baby got eczema and it's pretty much taken over our life.

Eczema? Isn't that just like, a rash? A bit of dry skin, the odd bit of redness behind the knees. That's what I thought, and almost laughed when the community nurse suggested I apply for disability allowance shortly after the eczema started. Four months on, it has nearly broken me.

I can't describe to you how awful it is just to see your baby not looking right. This might sound awfully superficial, but I'm sure it's much deeper than that. There must be something hard-wired into the deeper, older parts of a mother's brain, to feel ill-at-ease if her baby looks sick.

The skin of a baby ought to be creamy. Babies are bloody hard work, but the pay-off is you get to put your face and nose all over them and shower them with love and kisses and raspberries. With my baby, we went from this:








































to this:
















In the space of just three or four weeks, what started as the usual 'milk spots' seemed to evolve into something horrendous.

At first the doctor said it was a skin infection and prescribed a cream called Fucidin H, followed by antibiotics, which I gave without question - looking at the photos, wouldn't you? But all this did was upset his stomach, and as my doctor seemed at a loss, I took him to A&E.

There we saw a paediatrician who said it was Seborrhoeic Dermatitis, to stop the antibiotics and to get a cream called Double Base (an emolient).

When this didn't help either I turned to the facebook community and many suggested I gave up various foods in my diet (as he is breastfed) and see a homeopath. I've never thought much of homeopathy so it shows my level of desperation. To be fair, the homeopath was the only person at that point who really took a thorough history and actually seemed to be determined to help.



Meanwhile the rash spread to cover his whole body.

Over the next few weeks, I gave up dairy, egg, wheat and gluten in the hopes of helping what seemed to be an allergic reaction. There was not much feasting for me over the Christmas season!

We also saw another paediatrician in mid December who diagnosed eczema and gave us some help and sympathy. We were told to use steroid creams twice daily and in between put on a thick, greasy, paraffin based ointment called Hydromol.

There were mixed messages about the steroid creams, summed up by this, "They are harmless, but don't use them too much!"

Sometimes he would look a bit better, and I would think, I've cracked it! I tried keeping food diaries and sometimes I would think I had spotted a pattern. I tried various natural creams, all of which, especially Hope's Relief, were lovely. But none provided what I wanted - cure.

And moments of hopefulness were always swiftly followed by total despair, as my beautiful baby's face and body were taken hostage again.


He did not seem to be as affected by it as you might think, looking at these photos. He has a very sunny disposition, and seems to be able to smile no matter what. Sometimes I think he 'gets it' and I feel a sense of irony coming from him. We are very connected, and the eczema has only made me love him more.

But my god, it has been a trial. For starters, a lot of the time his face has been oozing pus. Not an infected kind of pus, just a sort of watery, pale yellow liquid. This has meant that (yes, poor me again, here we go) I have been unable to wear any normal clothes for several months - I've been living in supermarket hoodies, which can get chucked in the wash at the end of each day.

We have had to change his sheet every day, as this would become soaked in pus and Hydromol during the night. He sleeps beside me in the bed and sometimes I have felt disgusted by this soggy, pus-y little guy attached to my breast, I admit it. But only in very dark moments.

The nights overall have been the toughest. Because of his terrible itching, he has been unable to really 'settle' into a deep sleep, in spite of seeming to be a fairly happy sleeper for the first couple of months of his life.

I have been sleeping holding his arms to stop him scratching. Not very restful for me, but the alternative is impossible - I cannot just lie there and listen to him cry and rub his face with his mittened hands.

In fact I don't know how anyone could survive this situation without having their baby in their bed.

I'm completely knackered. This has been one of those periods in your life where you feel you are aging by about a year a day. My hair full of hydromol and pus, my horrible clothes, my haggard, exhausted face...oh there I go feeling sorry for myself again.

So I've been trawling the internet through my tired tired eyes. You know how it is - breastfeeding and peering at your smartphone. Just over a week ago I overheard a conversation in a facebook eczema group. Some women were talking about a guy called Dr Aron. Their tone was reverent. It had a sort of 'cult' feel to it, as if this Aron guy was the new Messiah.

Expecting to find a whacky website, I followed the link, to discover a South African Consultant Dermatologist, based in London, who specialises in child eczema. It all sounded good, too good to be true perhaps. I trawled google. I could not find a single person with one bad word to say about him.

Apparently (and this is anecdotal) he is so fed up with the needless suffering of children with eczema who are often given the wrong treatment that he wants to make his treatment more accessible and 'give something back'. To this end he has set up an online consultancy service, offering a low cost alternative to private face to face appointments.

His treatment method is based on a mix of creams. If you want to know more, watch this short film or read his website:

As we were thinking about travelling to London to see a specialist anyway, this seemed worth trying.

We are now on day three of his treatment. It's early days, and I'm loathe to get too excited, but so far the results speak for themselves:


Words cannot describe the delicious relief gained from pressing my face up to that taut smooth dry skin and kissing away like mad!

Even if it all becomes a nightmare again, I will be grateful for these few days of seeing a glimpse of a 'normal' baby.

Obviously I will be blogging about this again, as if Dr Aron's treatment works (as SO many of his former patients say it does), then the world needs to know about this.

Please keep your fingers crossed for my beautiful boy, for my patient little girls who miss their pre-baby mummy, for my long suffering partner who has born the brunt, and of course, greasy, pus-y, haggard old me...and watch this space.


UPDATE: 14th August 2014
We are still working with Dr Aron and my son's skin remains mostly clear. A blog post with more info coming soon but meanwhile, do join the Facebook group to see Before / After pics of others who have been treated by Dr Aron and talk to a supportive community of eczema mums, here: https://www.facebook.com/groups/492451777525485/

And here is the gorgeous boy!


UPDATE: 19th November 2015
We remain eczema free and have not used Dr Aron's cream or any steroid for over a year. After a bath we usually apply Lush Dream Cream but other than that, we don't do anything to his skin. He is peachy and beautiful and adorable, just as he was always meant to be! We remain eternally grateful to Dr Aron, and frustrated that this approach continues to be largely ignored by the NHS.



Comments

  1. Oh Milli. I'm a bit at a loss for words but gosh, poor little poppet, and guys too. I had no idea it could get so bad, our daughter gets the knees and elbows. A work colleague tried a hormone treatment at Great Ormond Street with their daughter which worked wonders for her but it looks like Dr Aron may already be yous Saviour.

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  2. My fingers ARE CERTAINLY crossed for you! Gosh you poor family. What a terrible thing to go through. I never knew eczema could be so bad. He's such a beautiful boy. Lets hope this is the treatment to end all treatments for him! Thanks for sharing this info!

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  3. My daughter was like this, this extreme. It was awful. I was embarrassed even to be out in public.
    It broke my heart and I still hate looking back at the pictures I took of her. There were multiple times that I had left her sleeping in her bassinet in our bedroom, wrapped tightly and wearing mittens to prevent the scratching, only to return to a very awake baby who had escaped her wrap and mittens and was now COVERED in blood, horror movie style.
    Awful.
    She has gone on to have bowel issues and is so far diagnosed with rice and corn allergies :(

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  4. hmm, looks familiar.
    it's the constant rubbing that gets you the most. I amnconstantly on edge and haven't had a full night's sleep in months.
    I have to say, though, I love the wet wraps. we have viscopaste with tubifast (greenline) over the top. we use those at least 3 or 4 times a week - on my daughter it's legs and arms (her eczema also covers her belly, face, throat and neck, but the viscopaste we use majnly onnarms and lefs because it's easy to apply)
    when she has a really bad episode, it's hydromol first, steroid (eumovate now, byt it started off as hydrocortisone and then elacon) applied and rubbed in, then.wrapping the viscopasre. the greenline holds it all together.
    when she's bad but not too bad, we skip the steroid. we csn put viscopaste on her body, too, and hold ot in place with "comfifast" clothing
    I made some pyjama tops that have extended, sewn-closed sleeves, which she wears in bed and on longer car journeys. she still rubs, but she can't scratch, which actually has a useful exfolliant effect!
    we have been through most of the creams and ointments. every time she gets a new one, it's like a new child for a few days and then back to normal. that's why the viscopaste is good - it's cooling, moisting and resetting all at the same time.
    we found that she rubs and scratches exposed skin - even nappy changes! tight clothing works well for that - leggjngs and tight teeshirts. long-sleeves and long legs.

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  5. we too rode the waves because severe eczema took over our baby. i am glad u are finding health again. for us it was a referal to an allergy clinic in london that finally gave us some grace

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  6. Wow, this is my 5month old child (and a mothers exact experience) to a tee! Thank you so much for posting!

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  7. I am so sorry your poor wee boy (and you!) is going through this. More use of topical antibiotics in addition to the emollients and steroid creams makes perfect sense.

    Have you read any of the research done into water softeners? They did a big study in England in hard water areas and found there was a big difference in the kids whose families started using a water softening gadget. The other promising research is into bleach baths. They sound horrific, but I can vouch for the relief they give my hands when I'm experiencing a flare up. The precise dilution can be found online (it results in bathwater with a similar chlorine content to a swimming pool) and your child has a 10 minute soak, twice a week followed by a thorough application of their emollient/treatment cream. This drastically lowers the staphylococcus concentration on their skin. When my hands are flared up and I want to tear my skin off, I give them a wee soak then just apply Diprobase. Instant relief! It's incredible. By the next morning my akin is less red, and the thickened patches are significantly softer.

    Hope this helps, though it looks like you're onto a winning regimen already.

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  8. Oh goodness, I was wondering about you and I'm glad to see a post from you. I am very sorry for the suffering your little one has had thus far - I truly hope that things improve from here with the treatment you are seeking :)

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  9. I know exactly how you feel, these are the pictures of my son as a baby too, I too breastfed, gave up everything to try and sort it out. Creams, lotions, potions nothing seemed to help. But the only thing I found that helped and I don't remember why or how it came about was the use of coaltar soap. It may have been in relation to one of the scalp shampoo's like neutrogena smelling like coal that made me make the connection. It was 24 years ago, he no longer has eczema, so my mind is a bit vague on it all. I hope this treatment keeps working for you and your baby. x

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  10. Such a relief to see your baby looking so happy. I can feel your stress as it had been my dillemma for my 2 kids. Luckily my son outgrown the eczema over the years but he was diagnosed to have asthma. He is now 5yo. Same with my daughter who is 4yo.

    I hope the treatment will fully cure the eczema.

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  11. That was ME who asked why you were no longer blogging :-)
    Glad to see you back. My heart was in my mouth all the way through this post. I wanted to say go to "Infasoy" as we did when I was combination feeding (cutting out dairy formula worked for Aaron's eczema) but then I saw you were exclusively BF and THEN I saw the photos. Way way worse than Aaron's eczema. I am so so so very happy to see that happy baby in the last photo and I hope the specialist's advice continues to work. When Aaron got older he had a return to eczema due to Aerial 3 in 1 but once I started washing with Fairy Non-Bio it disappeared once again. Currently he is free of it although he has ONE spot of it on his right hand. It's like it is dormant inside him and occassionally gets out.
    Liska xx

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  12. I cried reading this. I could have written it myself. Thanks for sharing.

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  13. (Reading this as I lay in bed, holding my baby's arms so he can't rub is sweet cheeks raw.)

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  14. It is heartbreaking to see any child suffer helplessly from something they have no control over. Doctors often just prescribe drugs with tons of side effects. When I came across a 20 year track record product with consistent results controlling eczema, psoriasis and rosacea symptoms, I just had to let people know.

    Since I'm not sure if mentioning brands is allowed here, I will simply say to contact me if you would like more information.

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  15. You have just written our exact story from 2009/10. I haven't yet written at length about it because it was so traumatic for us all and then I was just so grateful when we got past it, but your post has made me want to reflect on that journey. Thank you so much for sharing

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  16. I can't imagine how heartbreaking it must be...I hope your regimen continues to work!! My baby has a mild case now. It used to be worse but I eliminated sugar from my diet and saw a major improvement. ( I breastfeed) I have been searching for info and other mom's experiences and found your blog. I wanted to share this other post that I just read about using apple cider vinegar. I'm going to try it and will let you know how it goes. http://thehillhangout.com/2013/01/our-miracle-treatment-for-eczema/ I'm going to try with organic ACV. I've also read about fluoride in the water being a possible cause. Perhaps you've already heard of these things...just hoping to help!

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  17. I could have written this article too: In fact I have written my own story and (with Milli's knowledge) I wanted to post the link in case anything we tried might help any of you out there.

    http://www.maybediaries.com/2014/03/the-elephant-in-room-baby-eczema.html

    Love to all of you going through this at the moment
    XX

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  18. My son was born Oct 20, 2013. We just got our meds in last week from Dr. Aron, but so far, no improvements. I feel so lost. I'm so glad your LO finally has relief. <3

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  19. Oh sweet baby. I'm sure this has been heartbreaking for you. I hope you've cracked it by now!

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  20. My heart goes out to you and your little boy. Well done on your dedication and thanks for sharing this. That last picture made me beam :-)

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  21. Hi Milli - Melissa here from Birthtalk.org :) Your story is just SO familiar to me. I hope the cream continues to work - it looks so promising, and your little many is just so sweet. My 'little man' is now 15yo, and has absolutely no eczema at all. His skin has been smooth as anything for a long time now, yet we all remember the traumatic time we had - it is very hard to explain to someone else how challenging it is. Wishing you all the best xx

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