Questions about childhood allergies

Does it have to be this way?

It’s pancake day today, a reminder that, apart from the absolute truck load of meat my 10 year old boy eats at every opportunity, he is, to all intents and purposes, vegan. He cannot eat milk, butter, cheese, yoghurt, ice cream…anything with dairy products in. He also cannot eat eggs. Or honey. Or mustard.

And we do not know why.

Making vegan 'creme eggs', 2017

Some of you who have followed me for a long time might remember the absolute nightmare we had when he was a tiny baby. There were a beautiful little cluster of weeks after he was born (at home in water) when I thought, wow, this third baby thing is fantastic, you know what you’re doing and can just enjoy it! Yay! And then he got a little patch of a rash on his face. And it got bigger and bigger and bigger, until the skin all over his head looked like he’d been burned in a fire, the top layer gone; underneath red, raw and oozing pus.

And then my dad got diagnosed with terminal lung cancer.

As much as it’s said that all mothers want to have the baby days back, that is not really a time in my life I’d like to revisit. The rash on his face, although at first we were - inexplicably - prescribed antibiotics, was clearly eczema. Once this had been established, we were prescribed steroid creams - from which we were told we had to take regular breaks - and a series of different moisturisers, all thick and gloopy. I tried everything - I was breastfeeding. I gave up food group after food group. At night he would scratch violently in his sleep, so I slept next to him, holding his hands gently by his sides. We bought ‘scratch sleeves’, a strange kind of undergarment that meant his hands were covered in pure silk at night and he couldn’t tear his skin. Each morning, in spite of my being next to him and trying to prevent his scratching, they would be covered in blood and pus. I longed to kiss that peachy fresh baby skin, but there was not an inch of his body where it could be found. By just a couple of months old, he had it everywhere.

This was a decade ago and I can still hardly bear to look at the pictures. Anyway, let’s keep this moving - I’m writing this post because I want to talk about thinking outside of the box in health care, something I’m a fan of. Obviously my two birth books (here and here) have been about questioning the dominant narrative (birth is a dangerous design fault from which women have to be rescued) and asking, ‘does it have to be this way?'. When it came to the eczema, I felt let down by the health care system at the time, who told me, ‘Yes it has to be this way’. I was told his eczema was just something I was going to have to live with and hope it went away. I was offered disability benefits. I didn’t want disability benefits, I wanted him well.

I began to scour the internet. We tried all manner of creams that promised improvements. We even tried homeopathy, although I don’t believe in it. It didn’t work. Nothing did. The only thing that did work was the steroid cream, but then when we took the required breaks, the eczema just came back. I joined all manner of facebook groups and read and read and read. And then, one day, I ‘listened in’ on a chat that was taking place between three different ‘moms’ about what sounded like a miracle cure, via a doctor called Dr Aron. They spoke about him in evangelical terms, and I was excited and suspicious in equal measure.

I researched this doctor like mad. As well as looking him up and putting him through every internet search I was capable of, I also created a facebook group, the Dr Aron Eczema Treatment Discussion Group, for the sole purpose of flushing out any negative stories. I figured if he was some kind of crook or crank, then this would quite quickly come to light in an open facebook group (ten years ago, this was the dominant social media). But nobody had a bad word to say about him. Every single person who had had any involvement with him seemed to talk about him in evangelical terms.

And I was then to become one of them - and here I am now still evangelising.

I’ve written up the full story of how Dr Aron helped us here (originally published on my blog The Mule, I’ve moved it over here to substack)

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

After three days, the treatment, which was a specially mixed cream of steroid, antibiotic, and moisturiser, had transformed him.

And we never looked back.

I even featured in a Telegraph article about the Dr Aron treatment. When I look at this picture, even though I am ‘ten years younger’, I can see just how much of a toll the experience had taken on me. My hair was falling out and I was thin and beyond exhausted. And also full of joy that I could now kiss that peachy skin!

I’ve also written about how frustrating it was that the health professionals I talked to about the Dr Aron regime seemed at best, skeptical, at worst, disinterested.

A quick rant about the NHS approach to eczema

Even though I was meeting a lot of different doctors - in the A&E when his asthma developed, and in the allergy clinic for various tests - most of them seemed to almost roll their eyes when I told them I had found a ‘doctor on the internet’ who had pretty much cured his eczema.

This experience only strengthened my resolve to be a ‘difficult patient’ and to keep asking, ‘Does it have to be this way?’, whenever one of my children was sick.

In 2020 my middle child had abdominal pain and we ended up in the children’s ward. They said they thought it could be appendicitis but couldn’t be sure. “We will go in”, a doctor told me. “Go in?”. I had to push hard just to get him to explain what he meant. “Keyhole”, he said. “Once we are in, we will look at the appendix. If it looks like appendicitis, we will remove it.”

“Does it have to be this way?”, I asked.

There seemed to be some surprise that I wasn’t just going to go along with the standard path. “Well, we could try antibiotics?”, they said.

That night, my daughter on a drip, I lay beside her in the all too familiar children’s ward and couldn’t sleep. “Do you need your appendix?”, I googled. I read lots of interesting articles about the possible role of the appendix in the microbiome. In the opposite bed on the ward, a little girl who had had hers removed had developed a post-operative infection. She was in huge discomfort. I kept reading. The mad mother and google, night-time companions.

In the morning, a new doctor arrived. He was thrilled that we were on antibiotics. “You’ve done the right thing”, he told me. “Do you know they are only just starting to think about why you might need your appendix? It’s possible we should try to keep it if we can.” Yes, I said, I read something about that on the internet.

Which brings us back to Pancake Day.

After ten years of not being able to eat dairy and egg (and mustard and honey, but they are not such a big part of the standard diet!), my lovely youngest child is, forgive the pun, getting cheesed off.

“Does it have to be this way?”, he is asking.

He’s been super patient. I’ve watched him at multiple children’s parties, whilst other children eat cakes, biscuits, flavoured crisps, pizza, sausage rolls, pies, the works - and he hasn’t been able to eat any of it. It must have taught him zen levels of tolerance. But now he’s started to really feel left out. He is desperate to try an egg. He would love some grated cheese on his spag bol just like the rest of us. And I’d love to make him the best home-cooked lasagne!

So I’m writing this post in order to put the question on there to you - does it have to be this way? I’ve tried some googling, and I can’t really find much about allergies. I want to know:

• why are children like my son developing such severe allergies?

• is there anything that can be done to prevent this?

• is there anything that can be done (conventional medicine or alternative) to reverse or cure allergies?

• will they get better with time and if so, why, and is there anything we can do to encourage this?

• will they get worse with time and if so, why, and is there anything we can do to discourage this?

• will allergies get worse with each generation? (I had childhood eczema, asthma, and a mild egg allergy, which I no longer have). This worries me.

Just as I found the solution to his debilitating eczema through putting the question out to the ‘hive mind’, I’m doing the same now about allergies. I’d love to find a way to change things for him, and then of course, to share that story and help change things for others. So, if you have anything at all to say about allergies, please let me know in the comments. Thanks in advance for your help. I really do believe that the global conversations made possible by the internet can be a game-changer. With all the negative impact of social media, this must be one really positive thing which can really improve people’s lives. It definitely improved life for me and Albie!

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