I still think about how differently things might have turned out if someone had just explained the risks.
My son was only two years old when he was diagnosed with eczema. At the time, it was mild, just a small rash in the folds of his arms. It wasn't something I was particularly worried about.
During a routine wellness visit, his doctor prescribed triamcinolone, a topical corticosteroid. We were told to apply the cream to help with the rash and to avoid exposing the affected areas to direct sunlight.
That was pretty much it.
At first, the cream seemed to work. But then another flare would appear, so naturally, we would use it again. We trusted the doctors. We believed we were doing what was best for our son.
But over time, something changed.
His flare-ups became more frequent. The eczema started spreading to areas of his body that had never been affected before. And every time we went back to the doctors, we came home with more topical steroids.
Triamcinolone acetonide. Mometasone furoate. Derma-Smoothe/FS.
I remember being prescribed multiple tubes at once, almost like we were supposed to keep a supply ready for whenever the next flare appeared.
At one point, we were even given a one-pound jar of triamcinolone.
A whole pound.
Looking back now, knowing what I know about corticosteroids, that still bothers me.
We weren't having meaningful conversations about how long these medications should be used, how much was appropriate, or what repeated exposure could mean for a young child.
And when we questioned the treatment, we were reassured that the steroids were necessary to "turn the fire down."
We were told not to worry because topical steroids came in different strengths and the ones prescribed to our son weren't considered strong.
So we trusted them.
Until I couldn't ignore what was happening anymore.
When the treatment no longer made sense
I kept asking myself the same question.
Why was a treatment that was supposed to help my son's eczema being followed by increasingly severe flare-ups?
We had started with a small rash in the folds of his arms. Now we were dealing with something much bigger.
I wasn't a skincare formulator back then. I didn't understand the science behind corticosteroids or the skin barrier the way I do today.
I was just a mom trying to figure out why my little boy's skin kept getting worse.
Eventually, I made the decision to stop using topical steroids and try a different approach. I also stopped taking him back to those doctors because I had lost confidence in the treatment we were receiving.
And suddenly, we were on our own.
He was only three years old
My son was three when he went through what we believe was topical steroid withdrawal, also known as TSW.
I wish I could explain what it feels like to watch your child go through something like that.
He would cry, scream, and scratch himself until he bled. His skin was raw, painful, and extremely uncomfortable.
He was miserable.
And I was his mom. I was supposed to be able to comfort him, protect him, make things better.
But there were days when nothing seemed to help.
What started as mild eczema had become something that affected his entire quality of life.
I had trusted medical professionals to help us manage his skin condition. I followed the treatment we were given because I believed it was safe and appropriate for him.
And yet, here we were, dealing with symptoms I had never even been warned could happen.
I didn't know about topical steroid withdrawal. I didn't know what cumulative exposure meant. I didn't know what warning signs to look for when a treatment was no longer helping.
I learned about those things when we were already going through them.
And that's something I wish no other parent had to experience.
Life after withdrawal
With time, and through a different approach that didn't involve topical steroids, we eventually got through that period.
His skin cleared. His comfort improved. We slowly got our little boy back.
Today, my son still has eczema.
I think that's an important part of our story to share because eczema didn't magically disappear. He still experiences flare-ups, and we still have to care for his skin.
But those flare-ups are nowhere near what we experienced during that period.
We've learned how to manage his eczema without topical steroids, and his quality of life is so much better.
Eventually, I also started taking him to his routine wellness visits again.
But I'll admit, rebuilding that trust wasn't easy.
That experience changed the way I looked at medical treatment. I became more cautious, more involved, and much more likely to ask questions.
Not because I believe doctors are the enemy, but because I learned how important it is to understand the treatment being recommended for your child.
I understand corticosteroids now. And I still have concerns.
Years later, after studying skincare formulation and continuing my education in cosmetic chemistry, I have a much better understanding of how corticosteroids work.
I understand their anti-inflammatory effects. I understand why they're prescribed for eczema and other inflammatory skin conditions.
And I recognize that they can be an effective treatment for many people.
But understanding the science has also made me question how casually these medications were prescribed to my son.
These are medications, not ordinary moisturizers.
They shouldn't be handed out like candy, especially to parents treating young children.
There should be clear instructions about how much to apply, how frequently to use them, and how long treatment should continue. Parents should understand the risks associated with repeated or prolonged use, and there should be appropriate follow-up when symptoms persist, spread, or worsen.
And when a parent raises concerns, those concerns deserve more than reassurance that the medication isn't strong.
They deserve an explanation.
They deserve to understand the risks and benefits.
They deserve informed consent.
What I wish someone had told me
I wish someone had explained that topical steroids come in different potencies and that even medications described as mild or moderate require appropriate use.
I wish we had been given clear instructions about treatment duration and what to do when the eczema kept returning.
I wish someone had explained the potential risks of repeated exposure.
I wish our doctors had stopped to reassess the treatment when my son's skin continued to worsen instead of prescribing more medication.
And most importantly, I wish someone had told me about the possibility of topical steroid withdrawal.
Would that information have changed the decisions we made?
Absolutely.
At the very least, it would have allowed us to ask better questions, recognize concerning changes, and make more informed decisions about our son's care.
Why I'm sharing this now
For a long time, this was simply something our family went through.
But the more I learned, the more I realized how important it was to talk about it.
Not to frighten parents away from medical treatment. Not to suggest that everyone who uses topical steroids will experience withdrawal.
I share our story because I believe patients and caregivers should have access to clear, understandable safety information before beginning treatment.
Topical steroid withdrawal is a subject that deserves greater awareness, research, and clinical recognition. Its symptoms can overlap with other skin conditions, and there are still unanswered questions about its causes, frequency, and diagnosis.
Those uncertainties make careful prescribing, patient education, and listening to patient experiences even more important.
I support efforts to improve topical corticosteroid labeling, clarify instructions about duration and repeated use, strengthen communication about potential risks, and help healthcare professionals recognize when a treatment needs to be reassessed.
Because when you're a parent sitting in a doctor's office with your child, you're trusting that the information you're receiving is enough to make the right decision.
And sometimes, what you aren't told matters just as much as what you are.
My son is doing so much better today. I'm grateful for that every single day.
But I'll always wish we'd been given the information we needed before things got so bad.
Parents deserve to know. Patients deserve to understand. And our children deserve that level of care.
With love,
Vero
Founder of Scrachee and, first and foremost, an eczema mom.
An important note: This article shares our family's personal experience and is not intended as medical advice. Please consult a trusted qualified healthcare professional before changing or discontinuing prescribed treatment, particularly for children.
