Content warning – This post contains references to medical trauma, distressing health experiences, and emotional hardship. Please read at your own discretion.
I’ve avoided writing this for such a long time. It’s emotionally very heavy and I don’t like reliving it. The trauma experienced during this time was something I’d never wish on my worst enemy. It’s raw, it’s personal, but it’s real. And it’s time.
This is the story of my son Jude’s journey through Topical Steroid Withdrawal (TSW) and mine, as his mother. It’s also the story of his sister Arlo, and of our family. Of fear, of isolation, of fury, and of hope. I’m not here to explain anything about TSW from a clinical perspective (I’ll write another post for that). This is about what we lived. What we endured. And how we made it through. I hope this gives you some insight into the dangers of topical steroids and also hope that there’s light at the end of the tunnel if you’re already on your TSW journey.
A Childhood Marked by Skin
Eczema and I have known each other a very long time, I lived it as a child. As the typical atopy kid, genetically predisposed to an overreactive immune system and to develop allergic conditions like eczema, hayfever, and asthma. I reacted to everything from dust and pollen, to animals and even sunlight. Living in the Australian bush on a sheep and cattle station at Cunnamulla, Queensland - I was surrounded by everything I was allergic to.
At around five years old, we worked out how I could ride my little Welsh mountain pony, Bubby Gum Gum. Dad would get Bubby ready, Mum would give me a Polaramine 20 minutes before, run me a Pinetarsol bath and prep the calamine lotion. They'd then dress me in long pants and tell me not to touch my face or scratch myself I’d explode into a full blown allergic reaction. I even remember a time when we tried dressing me head to toe in winter clothing, gloves included to try to minimise the allergies. It never really worked.
Ten minutes of joy on a horse, followed by that cool bath to get the allergens off me and calm my immune system down.
Photos: Bubby Gum Gum, the horse I was so allergic to - 10 minutes later I'd be in hell. The other photo isn't very clear but it shows the eczema covering my arms and legs, some on my cheeks.
So I was no stranger to eczema, asthma and allergies.
In my late twenties, after facing my own health issues and consulting with many naturopaths, I started learning about gut health, nutrition, and how what we put into our bodies can affect what happens to the outside of our bodies. I’d learned a lot about living a low tox lifestyle and I questioned everything I thought I once knew to be true. But I hadn’t yet put everything into practice, and living in mining camps as a vegan meant my diet was fairly restricted – The 4 years I spent as a vegan is another story entirely.
Years later, when Arlo was born, she developed eczema too. I was breastfeeding and immediately cleaned up my diet (for the most part). I tried what I could to manage her skin naturally, but we did occasionally use hydrocortisone when things got too uncomfortable for her. Given I was slathered in hydrocortisone creams as a child, I thought it would be fine to use for a little while.
As her immune system strengthened over time, her skin healed. Today, she only flares up occasionally with too much sugar or processed foods, it’s always mild and usually goes away within a day or so. I do feel the most healing happened after I weaned her as her diet was more controlled than mine was while I was still breastfeeding her. This isn’t negativity toward breastfeeding in any way, it is more a reflection of how what we ingest, is what our babies are ingesting and if we can’t stay away from triggering foods, then we need to weigh up the pros and cons.
So, when Jude developed eczema as a baby, we assumed it would follow the same path. But around 11 months old, his skin was worsening - I believe again, poor gut health combined with allergens. Partly due to my diet at the time, think end-of-year and Christmas indulgences while breastfeeding… His skin flared, and my now usually eczema-free skin did too.
It was during covid restrictions, and as those filthy people who wouldn’t comply, we weren’t welcome at most medical clinics. Our usual doctor’s office told us outright we weren’t welcome until we complied with their j.a.b. requirements (more on that same doctor’s office later). We had to rely on telehealth.
A telehealth doctor, unknown to us, prescribed hydrocortisone for Jude’s skin and we used it. At first it worked for a little while, then his condition continued to get worse and within a matter of weeks, about 40% of his little body was inflamed and raw. We booked another telehealth appointment. The advice? Keep going. Increase the frequency. Be consistent.
We tried, we were consistent and applied just to the affected areas at nappy changes as directed by the GP. It felt like we were chasing his eczema. A new patch here, another flare there. It didn’t feel right and I was panicking by this stage at how terrible his skin was. The cortisone was just not working, in fact it seemed to be making it worse.
Then one night, I saw a photo online of a baby who looked exactly like Jude. The same haunted eyes. The same damaged skin. That child was going through TSW. My heart sank.
I showed the photo to Jude’s dad and said while Jude was screaming, “I think this is what’s happening.” I explained what I’d read, the horror stories, the cycle. And we took the terrifying step of stopping the steroids.
We had no idea the horrors we were about to face.
The Descent Into Hell
It was horrific. The steroids had already started failing him. And when we stopped, everything exploded.
His skin wept. It bled. He scratched relentlessly. His whole body was raw and red. He didn’t sleep. At all. Thirty minutes at most. And even that was rare.
We lived on the leather couch in front of the TV. There was no point going to bed. I’d line the couch with sheets and towels, change them daily, soaked with blood and ooze. He would stick to his pillow. I’d have to peel him off each morning. It was like something out of a nightmare.
And it just kept getting worse, month after month. I joined some Facebook groups for TSW parents, and I learned that worsening was normal before it got better. But knowing that and surviving it are two very different things.
I truly thought he was going to die. I thought he would succumb to infection. One day I couldn’t take the fear anymore and took him to the hospital. I was terrified they’d report me. That they’d take him from me. That they’d see his skin and decide I was neglecting him. But the doctor just stared at him, holding back tears. He didn’t say much. Prescribed antibiotics. Wished us luck. I got home, locked the front gate and cried with relief that I still had my baby boy in my arms.
TSW is so misunderstood in the medical world. Most doctors are educated by pharmaceutical companies who have no interest in admitting their drugs cause something this devastating. So TSW gets swept under the rug. And people like us suffer in silence.
I avoided going out. I couldn’t face the stares. The whispers. The pity. I saw people look at him and silently ask, “How could a mother let her child get like that?” So we hid. Arlo went to a home daycare where they knew our story and were kind. Otherwise, we stayed in. Groceries delivered. Front gate locked. Driveway alarm activated.
Even simple things, like putting Jude in the car, were hard. His blood and ooze would get on the car seat straps, the pram straps. A shopping trolley was out of the question, not only would he get ooze on it, he could pick up a life-threatening infection. People don’t know how to handle a suffering child. And God forbid he cried in public. The discomfort it caused in others was unbearable. It was completely insufferable for us and for everyone around us.
By this time, I also was starting to go through TSW myself. When I applied the steroids to Jude, being a time-poor mum, I simply rubbed what was left on my fingers into my hands instead of washing them. Big mistake. Now we were both suffering.
Relentless, endless suffering. Zero sleep. No real support. I mean, what could anyone really do?
I used to stare out the window at a jacaranda tree with a swing on it. And I would imagine hanging from that tree, just to end the suffering. It was the darkest, most hopeless time of my life.
Every Single Thing We Tried
I didn’t cope. I couldn’t leave. Jude needed me like a limpet. All day, all night. We both cried, constantly.
Arlo was three and learned to care for herself. She figured out how to get breakfast. How to entertain herself. Because I was always tending to Jude and her father worked away for half the month.
We tried everything. We changed our diet. GAPS diet. Gluten-free. Dairy-free. The Eczema Diet. We survived on lightly boiled chicken and steamed vegetables.
We tried NMT (no moisture treatment) and every variation of it. It was excruciating and just unbearable for a little boy of Jude’s age.
We saw Professor Kerry Bone every two weeks - One of the most esteemed herbalists in Australia. He said Jude’s case was one of the worst he’d ever seen. His herbs certainly helped—but they didn’t cure it. Because TSW only has one cure: time.
We did bleach baths. I hated it. But I was desperate. We did apple cider vinegar baths. Dead Sea salt baths (which I still recommend to this day). I bought 25kg bags of Dead Sea salt from Source Bulk Foods. Very expensive, but very worth it. It gave temporary relief and helped stave off infection.
We would wet wrap Jude at night. After his bath, I’d soak a onesie in warm water, lather him in zinc cream followed by a thick moisturiser and then put the warm wet onesie on him, followed by 2 dry onesies over that. What a way to find comfort, prevent infections and keep wet but warm… poor kid.
I tried every lotion, cream, ointment, balm. Nothing worked. The only one that offered a decent level of moisture overnight without further irritation was an over-the-counter petrochemical-laden ointment. The stuff I now hated due to my severe distrust in the pharmaceutical industry. Stuff I never wanted to put on my baby. But it soothed his skin and held in the moisture, so I used it.
I was sick of using it. Furious. So, I searched for alternatives.
That’s when I discovered tallow balm.
The Day I Took My Power Back
I found a woman on YouTube making tallow balm for eczema-prone skin. Given my now deep-seated hatred for Big Pharma and my love for natural remedies, I gave it a shot.
On June 2nd, 2022, I rendered my first batch of tallow and turned it into a whipped balm.
The texture blew me away. It felt exactly like the chemist ointment, but it was pure, real, uncorrupted.
I remember thinking, “This is it. I just hope it doesn’t irritate him.”
It didn’t.
His skin stayed moisturised for just as long. His redness lessened. He was calm when I applied it. That night, he even slept a little. Probably a coincidence. But it gave me hope.
Tallow didn’t heal him. Time did. But tallow gave us something else—a natural alternative to the crap I was forced to rely on. It was a piece of our power, returned to us.
The CBD Chapter
At the end of September 2022, a family member offered help. They had a connection to a doctor working in the CBD space.
We drove to Brisbane. I brought a fresh batch of tallow with me. The doctor prescribed CBD isolate compounded into my tallow. We took it to a pharmacy. They’d never done it before. Neither had the doctor. But they said yes, for Jude.
And it helped. It really seemed to help. He cleared a hell of a lot over the next 3 weeks or so.
But I need to say this: the 8-9 month mark in TSW is often a known turning point. It’s usually when things are at their worst… and then noticeably start to get better. So maybe it was the CBD. Maybe it was just time. I’ll never know. But it certainly did seem to make a fairly immediate difference.
The next hurdle we faced was finding someone to keep prescribing it as the doctor we saw was no longer seeing patients - Our appointment was a one off. We got lucky again again though, and found a doctor in Toowoomba who (with some pleading from a desperate mother) would. But after a few months, he moved clinics. The new clinic? Our old one. The very same doctors clinic we were told we weren’t welcome at until we complied.
Our new doctor who was willing to prescribe the CBD for Jude, was told he could only practice from their clinic if he agreed not to prescribe CBD - The owner of that medical centre doesn't believe in CBD. The fury that boiled inside me was palpable.
We were out on our own again.
But by then, thankfully Jude was improving. He didn’t need it daily. Eventually, we stopped using the CBD balm altogether. Plain tallow was enough.
Then I began using Whip Native, which is my own creation with lemon myrtle and nerolina, and I swear those oils helped keep our skin infections away. For both of us. It’s now all we use in our household.
Jude Today
He’s radiant. Healthy. Joyful.
He started kindy this year and is absolutely thriving and loves his new kindy friends.
Photo: I have blurred his eyes to try to protect his identity online.
After nearly wasting away for over a year with no growth (he actually lost weight in that time), no speech, no development, he’s now caught up. He has no remaining scars and his skin is lovely. He gets some light eczema from time to time, usually if he eats too much sugar or processed foods, but for the most part his skin is clear and he no longer spends all day scratching and tearing at his skin.
He climbs trees. Digs in the sandpit (sand once caused so much havoc!!). Plays with friends. Smiles. Runs. Laughs.
He tells me he wants to be a palaeontologist when he grows up - I didn’t even know what that word meant until I was in high school.
He remembers though. He’ll look at photos and say, “That’s when I was sick. That was sad.”
He is gentle. Kind. Empathetic. Strong. And our bond is absolutely unbreakable.
To Any Parent Of A Child Going Through TSW
You are doing your best. And that is enough.
You will doubt yourself. Every hour. Every minute. I did. I still do.
I knew steroids weren’t the answer. But I used them anyway. Because I thought they were fine. Because I used them as a kid. And I survived.
But TSW doesn’t happen to everyone. And you won’t know if it will happen, until it’s too late. It’s not worth the roll of the dice.
If you are in the thick of it right now, know this:
You will get through it.
It does end.
I know it doesn’t feel like it ever will. But I promise you, it will.
And one day, your child will be smiling and laughing, and you’ll remember the hell you both endured and know that you survived it.
Sending so much love. So, so much love.
Asti Mary x
PS - I have popped some photos and videos below of our journey.
This was Jude at 5 months into withdrawal. It was the middle of a difficult night so we had just had just had a dead sea salt bath and he was wet wrapped. Sitting up all night watching dinosaur videos on YouTube was how we survived most nights. There's very little sleep when you go through TSW.
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