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:
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.
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.
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.