Lessons in Life and Eczema

The last few years of parenting a child with chronic, often severe, eczema has taught me a great deal about life and disease. But one of the biggest lessons I’ve learned overlaps both topics, and is about trust.

Around six months ago, I saw a post on a local moms group on Facebook where someone, let’s call her Mary, said she had been using Lipikar cream religiously on her infant but his eczema had still not cleared. There had apparently been mention on this forum of an all-natural moisturiser that worked like magic and Mary wanted the details.

A few people posted the name (PureCare Herbal Cream) and sang its praises, and a few more said they sell the cream.

Remembering how distressing it was to have an infant with severe eczema, I wanted to help. I posted that I had never heard of this miracle cream, despite having tried almost every cream that has been approved by the Eczema Society of Canada and the National Eczema Association in the US*, but was glad to hear how much it was helping everyone. I added that I had been through this same experience but eventually realised there were no miracle one-step solutions – eczema care involves moisturising, treating flares, and avoiding triggers. Lipikar was a great cream, but so was something as simple as Vaseline. Perhaps if the flares were not going away it was time for Mary to take her son to the doctor.

There were immediate replies to my post saying that Vaseline was “not natural” and so should absolutely not be used, and that this magic cream was indeed the solution. I was taken aback by the ferocity of the replies and decided not to wade further into this discussion. Mary, on the other hand was satisfied with the consensus, and made arrangements to buy the cream from one of the other mothers. Each to their own, I thought, and left it there.

A few months later, this same cream made news headlines: Health Canada issued a warning saying PureCare actually contained a “super-high potency” steroid (clobetasol propionate) not stated on the label and was not safe. No wonder it worked like magic.

Once again, the parenting forums were ablaze, this time with discussions of a class-action lawsuit.

How interesting that we can feel suspicious about a mild steroid cream prescribed by an extensively-trained doctor but trust strangers just because they happen to be parents too! I remember being desperate for a solution and looking at any and every source, so I understand where Mary was coming from, but the plural of anecdote is not data.

Here are some rules on trust that I’ve learned from my journey so far.

Don’t (blindly) trust the internet:

There are immense benefits to having a wealth of information literally at our fingertips but a consultation with Dr Google should be a way to come up with better questions, not complete answers. Gather up tips and information, but don’t try anything that hasn’t been reviewed by a doctor or the health authorities.

Trust your doctor:

There is no secret conspiracy where doctors get some commission every time they prescribe a steroid cream. There is no ulterior motive. When your medic prescribes something, it’s probably necessary.

But trust your gut too:

Not all doctors are created equal and if you are not being taken seriously because your doctor is trivialising eczema, or if you feel like you are fighting this battle alone because the treatments they suggest aren’t working, then get a second opinion and/or a referral to a dermatologist. We are very lucky have a pediatric dermatologist who works together with us to come up with a plan that suits our needs and preferences.

Trust science:

Topical steroids are not the same as anabolic steroids and when used properly, the way the dermatologist prescribes, they have minimal side effects. I have applied steroids of varying strengths to different parts of my baby over the last three years, under the guidance of my doctor. A rough calculation shows that my right index finger (I am right handed) has had around 1000 exposures to some form of steroid cream so if they were as bad as we imagine, my finger would have fallen off by now.

Trust your child:

Eczema is called the itch that rashes because often the inflammation is present before we can see it. So when your child is consistently trying to scratch the same area even though the skin looks perfectly fine to the naked eye, trust that there is inflammation there and don’t tell them to stop scratching. Then treat that area like your doctor (whom you trust) recommended.

Trust that it will get better:

Two years ago, if someone had told me eczema would not rule my life in the near future, I would not have believed them. In fact, many doctors did and I didn’t. But with the right guidance and some determination, my family has been able to come out of the other side -smoother, healthier, happier and much wiser.

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