This is just to record our journey beginning from the first bout of eczema with our son. What started as a light rash, turned into a weeping eczema, which then got bigger and took us for a roller-coaster ride for the next 16 months.
In the beginning, when it was first identified by our pediatrician, we were just given Triamcinolone Acetonide Ointment. From what we could find, it was a pretty strong class of steroid (Topical Steroid Class IV), which was 3 classes above over-the-counter Hydrocortizone intensive healing we gave him.
The prescribed ointment worked like instant magic, within a couple days the rash subsided. The bad news is, as we later learned the hard way, the effect only lasted for two weeks at the most before the rash came back with a vengeance. What really scared us was it looked like we had to keep giving our two-year child a strong steroid along with the known and unknown side effects.
In time, the rash that was only focused on one spot in right ankle spread out to his earlobe, then after a couple more months, to his stomach and chest, then upper back. All of these areas were scratched until they bled. At a point, even the head nurse in our church had to call us and asked for a letter from our doctor that what our son had was not contagious before she could let him back to class. While that issue by itself was easy to take care of, it was quite embarrassing.
I remember the exhaustion of keeping watch at night so the little guy did not scratch himself until bleeding again.
Overall, to say that this whole experience was extremely frustrating is an understatement. It affected our sleep and consequently performance at work. At one point, I received warnings from my supervisor for coming in late two days in a row just barely made it to the daily meeting.
So after visiting three different doctors without any meaningful results other than getting prescribed with stronger steroids after every visit, we knew we had to make a radical shift and try something different.
We came to a realization that our pediatric and dermatologists, while they were helpful in preventive and corrective measures, they were not responsible for investigating the underlying cause because it would have been too costly in terms of their time and energy to do so. Each person is unique and this process will bring different results every single time with different individuals.
One thing that’s surprising to us was when we asked if there was any dietary changes we needed to make, the answer was always the same, “No.” But we always felt that even if food is not the cure, it doesn’t make sense to say that diet doesn’t make a difference at all.
Almost at our wit ends, we scoured numerous forums, blogs and other social media about eczema because this made us more determined to find a way at least to manage it if there was no cure.
These are not necessarily in order, but during our research, we found out about TSW (Topical Steroid Withdrawal). This is also an interesting find because this sounded like a conspiracy theory if you haven’t experienced it. But I didn’t know it was a controversial issue until I asked one dermatologist about it. Even before I finished my sentence in asking the question, she just cut me off and said she did not believe in it because it was not backed up by science. At that point, I had to deal with two conflicting opinions.
While I can’t speak for the ITSAN website, it looked like a legit website which were backed by real doctors. But how can you verify it? So trusting this dermatologist, we ignored this as something that was not too relevant for us. And we wished that we made the right decision then but that’s where we found out that we learned the hard way to always verify everything yourself.
Eight months into using the steroid (on and off), one day our son’s cheeks turned red which was different than his eczema. He didn’t feel the itch too much but it was obvious it was irritating him. So we had to take the nuclear option and stopped the steroid even if it would make him itchier and bled more. Because the steroid just masked the symptoms and in the end the eczema was even harder to control that we got depended on the steroid more and more.
And this was the thing that felt very counterintuitive and scary because it felt like what we were doing was not “blessed” by the doctors, but we felt that we could not just keep going to a different doctor and got a different kind of steroid. It was a scary experience.
Just to fill in the details as we stopped the steroid, we opted for a more traditional approach like using an ice pack to control the itch and a mixture of extra-virgin coconut oil and turmeric (can be powdered or fresh, organic even better) for the topical ointment on the skin especially for the bleeding. Now, based on our experience here is the topical ointment, if they’re not cleaned can cause him to itch so we need to clean him at the end of the day and re-apply as needed. Another important note is we didn’t stop the steroid cold turkey although we didn’t wait too long either to stop it (we wish we took a better note on this one, but again we got scared that our son got exposed to a steroid for a bit too long so we thought the sooner, the better).
At the same time while we were doing that, I also ran across these two books by Sarah Ballantyne: The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body and The Paleo Approach Cookbook: A Detailed Guide to Heal Your Body and Nourish Your Soul. They were highly recommended in several forums. So, a bit out of desperation, I snatched these two right away. My thought was what have I got to lose anyway.
In the first book, The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body, Sarah Ballantyne is very thorough in explaining all the science of how our body works and how it’s impacted by our diet and lifestyle, apart from our genetic predisposition. If you’re interested reading about the why and the how, this is a very good book to read.
If you like to be more practical though, basically just want to get something done quick to “take care” of your issues, then the cookbook may be the better choice. You can right away, follow all the recipes and get things going with your diet to troubleshoot your skin issues.
Another set of books I got, two books by Karen Fischer on Eczema Diet:
The Eczema Diet: Discover How to Stop and Prevent The Itch of Eczema Through Diet and Nutrition
The Eczema Detox: The low-chemical diet for eliminating skin inflammation
We learned that one key thing with trying to improve your skin condition through food can be extremely slow and in the beginning there could no signs of improvement at all. But we went by the fact that when we eat healthier, at the very least the condition is not worsening.
Eventually the effort paid off. Our son got rid of his eczema after stopping his steroid medication (which got worse temporarily before it got better) and changing his diet.
In the end, we found out that he was sensitive (not allergic) to dairy products. We took out his daily milk and substitute that with Oatmilk. First, based on a recommendation by a friend, we switched to Goat milk first. We had improvement a bit, but then it was stagnant and it seemed to get progressively worse again so we stopped the goat milk as well. After a few weeks stopping dairy.
The wait was long and arduous, full of anxiety for both of us for sure, but slowly, his condition got better. Sometimes there were setbacks but they were never that bad. Eventually, the red spots on his body started to disappear and that was such an encouraging sign to us to keep going. And finally the one that was left hanging was the one that was always the worst spot, the right ankle before even that one also vanished entirely.
Now many will argue that most eczema, eventually will disappear by itself even without you changing the diet. I beg to differ. What’s proven here although I don’t remember the timeline, if we started to be more loose on his diet, our son would start to feel itchy again on his ankle even though there’s no rash yet. But we’re more alert this time and won’t let it go to the next stage and once we readjust, he started to feel better again and now we rather maintain it that way even though once in a while when we have social gathering with friends or birthday parties, he can always eats whatever he wants. As long as we keep giving healthy diet, his body is able to tolerate splurge of junk food once in a while.
One interesting thing that happened at his early check right after he had no eczema episode. Our pediatrician noticed that he did not have that issue anymore and she asked what we did to make him better. And we told him about the diet, and she wrote it down and put that in her note which I found really interesting. I have great respect for our doctors and will never dismiss their opinions, but in this case, one thing I learn is sometimes you can never 100% blindly follow what they say without verifying. What I mean is this. When we asked if there were other things we could do other than giving them prescribed steroid and if we should change the diet. All of them said no and told us to keep at applying the medication until it disappeared. Had we blindly continued to follow their advice, I’m sure we would be worse off now than 16 months prior.
Only through research and consulting with other experts who approach the issue in a more holistic way, we knew that actually they were all related and steroid while has its use, can do more harm than good especially for very young children. Some anecdotal evidence might not be scientific but you can’t entirely dismiss them as if nothing happened. One dermatologist even cut me off and told me TSW is a myth and then, we experienced it. After much research, many doctors actually admitted to it. So it’s highly controversial.
Lessons Learned
- Always take doctor’s advice with a grain of salt. Recheck with other reliable sources or have a second or even third opinion and listen to your body or child more. You know them better than other people.
- Find a doctor who will listen to you and don’t dismiss your concerns, whether it’s good or bad. Have him or her address it and see how he or she answers your questions.
- When it has something to do with our autoimmune system, be willing to think outside the box and try it. Now, I’m not advocating an alternative medicine that we don’t hear about. I’m not that adventurous to get into that kind of experiment. But modifying your diet to improve nutritions intake sounds make sense and it’s not a stretch. To that point, even if it didn’t make any improvement in our case, there’s nothing wrong with eating healthier, there’s no argument there. In our case, it turned out to be part of the solutions.
- There is a time and place for medicine, but rarely by itself. Medicine is helpful, but medicine alone often times does not take care of the real issue, only the symptoms. So medicines, along with lifestyle adjustments (including healthier choices of food), work better for the long term.
- Check other things that you may overlook, but may have significant impact. For example, this is a bit too embarrassing to admit, but we did not realize we had to clean our washing machine’s filter regularly and that was gross.
I hope our experience can provide some encouragement to others who are debating if they should adjust their diet to eat healthy and achieve a longer term health as a result.
We didn’t strictly follow Paleo diet, but we certainly adopt most of it and remove all the refined grain as much as possible although we still eat white rice (reduced portion).
References
Topical Steroid Strengths: The 7 Drug Classifications by Relative Potency
Topical Steroid Withdrawal Syndrome Support
Topical Steroid Withdrawal: A Case Series of 10 Children
A systematic review of topical corticosteroid withdrawal (“steroid addiction”) in patients with atopic dermatitis and other dermatoses
Books
- The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body
- The Paleo Approach Cookbook: A Detailed Guide to Heal Your Body and Nourish Your Soul
- The Eczema Diet: Discover How to Stop and Prevent The Itch of Eczema Through Diet and Nutrition
- The Eczema Detox: The low-chemical diet for eliminating skin inflammation
Products Mentioned
The information on this web site is provided for entertainment purposes only; it is a general reference for healthcare consumers and providers; it is not a prescription for any individual person. It is important that you consult your child’s qualified healthcare provider before implementing any of the research discussed on this web site.
Disclaimer: This is based solely on our experience and should not be treated as medical advice. You should always consult your doctor(s) with any medical or health concerns before starting any new diet, products or supplements.
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