In 2013, a medical article was published about the case.
https://www.mja.com.au/journal/2013/199/7/treatment-failure-atopic-dermatitis-result-parental-health-belief
In that article, authors summarized that topical steroid phobia was the largest mistake of the parents.
I don’t agree with the authors. The patient died from infection (sepsis) and not from disuse of topical steroids. Topical steroids never prevent infection or sepsis in eczema sufferers. There is no such medical evidence.
People （including non-special medical doctors） are liable to think that the skin treated by topical steroids is apparently clean and such skin must be strong against infection. However, it is an illusion. Topical steroids suppress the immune system and damage the epidermis. After all, the skin of eczema sufferers is easy to cause infection regardless of use or disuse of topical steroids.
Malnutrition is a factor of susceptibility. The daughter of Indian parents had fallen into malnutrition. The cause of malnutrition is therapeutic failure of atopic dermatitis. If the patient was treated by topical steroids, malnutrition might be avoided. In that meaning, topical steroids could be one tool for preventing the tragedy. However, were topical steroids absolutely necessary in this kind of case? I don’t think so. I have already written an article about it.
http://mototsugufukaya.blogspot.jp/2013/06/for-parents-of-atopic-children-some-of.html
Experienced food allergy specialists (mostly pediatricians) can treat atopic children successfully without using topical steroids. They never only restrict food items but look for what is eatable for the baby. They never forget to check the patient’s weight and draw the growth-curve.
The common method of such pediatricians starts from stopping breastfed. Totally controlled artificial milk is their tool. They add various food items one by one carefully observing the child’s eczema. They balance the weight increase and eczema status.
When the patient is suspected severe infection (sepsis), such pediatrician also might use topical steroids temporarily. Topical steroids certainly improve eczema and lessen protein loss from the skin. It benefits for improvemrnt of malnutrition. It is a method of short-cut for emergency.
However, daily routine use of topical steroids is not necessary for care of atopic children from the viewpoint of prevention of malnutrition. Some pediatrician even prefers disuse of topical steroids because it can clarify the causal food more obviously.
The tragedy of the Indian family originated from that they couldn’t believe the modern medicine. If the main reason of their distrust lies in steroid-phobia, the problem exists in the side of our modern medicine. If we could accept and treat the daughter without using topical steroids, the parents might have believed our medicine. If the parents could find any doctor who would treat the baby without using topical steroids, the tragedy might not have occurred.
It is enough possible medically in fact. The problem is that such method of topical steroids disuse is far more troublesome than simple prescription of topical steroids. Disuse of topical steroids is not medically wrong but inconvenient or unfavorable for dermatologists. That’s all.
In Japan, we have experienced almost the similar case. A baby with atopic dermatitis died from malnutrition and sepsis several years ago. Their parents were believers of newly-arisen religion. They didn’t take the baby to see any doctor and tried to treat the baby’s eczema by their religion but only to fail. They were judged guilty by Japanese coart.
After media news was presented, many dermatologists referred to the case and blamed disuse of topical steroids by atopic patients. But the baby didn’t die from disuse of topical steroids. The baby died because the parents didn’t take him to hospitals. Why didn’t the parents take the baby to hospitals? It is because they couldn’t find any doctor who would see the baby without steroids. Why are most dermatologists reluctant to see such patients who prefer disuse of topical steroids? It is because either they are not used to such a way or they think it is too troublesome and not to pay.
I am not so proud about this problem because I am also not seeing patients with atopic dermatitis now. What I think I am proud is that I am honest. Most dermatologists (or pediatricians also) seem to try to conceal the truth and seem to try to lay the blame on topical steroid phobia.
Why do patients with atopic dermatitis feel topical steroid fear? Why do only patients with atopic dermatitis fear while asthmatic patients feel far less fear to inhaled steroids? It is just because there exists the phenomenon of topical steroid addiction in the skin organ. The skin can be damaged by the long term use of topical steroids and the eczema becomes hard to cure.
Many patients notice that phenomenon worldwide and that is the origin of steroid-phobia.
The blame by dermatologists to disuse of topical steroids in case like Gloria Sam will never solve the problem. Patients with steroid phobia will become more reluctant to visit hospitals if they are blamed and the tragedy might even increase. It ends only as a self-satisfaction of dermatologists in the small society of dermatology at all.
What is the most needed is the warning of malnutrition and sepsis to parents of eczema babies and recommendation of immediate hospital visit apart from the discussion of steroids if they noticed such symptoms. It is not the essence of the case of poor Sam family whether we should use topical steroids in patients with atopic dermatitis or not.
I never blame any dermatologist for not seeing patients with atopic dermatitis without using topical steroids. It is really troublesome and not to pay. I also am not seeing them now.
However, we dermatologists should be honest in front of patients at least as human beings. We should not make an awkward story of poor Gloria Sam as a victim of topical steroid phobia just because it is convenient for dermatologists. It is a shame in Japanese feeling and a sin in European sense.
There are still very few dermatologists or pediatricians who eagerly see such patients without profit-and-loss arithmetic just as me over ten years ago. They are a real property for both patients and doctors. We should not disturb them by the stupid debate like this.
PS : May the soul of little Gloria Sam be peaceful in heaven and her parents become happy again in the future. They must have suffered and struggled enough.
Related my article about infection in atopic dermatitis is also in the following URL.
http://topicalsteroidaddiction.weebly.com/chapter-2212288hostile-criticism.html
Sorry, the comment column is not available now. But the author believes readers can find some hints to overcome their own situations by the previous comments.
Very interesting article, Dr. Fukuya! ありがとうございます
返信削除hello dr, i have recently stopped using steroidal creams, (about 3 months now) and have been prone to ear infections when of the cream - i was prescribed ear drops which contained which contained flumetasone pivalate - which i believe is a cortisteroid, will my using this prolong ny recovery the same if i used topical steroids, thank you
返信削除You can stop steroids by either way of cold turkey or gradually. Temporary resume or small amount of use during TSW period never interrupts its course. It is the same as diet or quitting smoking.
削除By the way, I recommend you ask to your doctor first of all that you like to refrain from topical steroids. There is no situation that requires topical steroids absolutely．Maybe your doctor only thought it would be better to use TS. So your doctor would agree if you request not to use.
To seek second opinion is important but negotiation or frank communication with your doctor is more important.
Thank you for sharing your opinion on this with fearful parents of tsw children. I sure hope the awareness of overusing steroids becomes more widespread in the coming years because it sure messes up the child and family life.
返信削除I have another question for you. My yearly check-up at the doctor showed high esophinil count as I am 38 months into tsw. I get watery eyes, stuffy nose and sneeze a lot. Is this common and does it calm down?
Eosinophil count often exceeds over 50% of the total WBC. It is very common in TSW practice but uncommon for general dermatologists. So sometimes patients with TSW are even suspected rare blood disease.
削除Lymphoadenopathy is also common in TSW course and the patient is suspected lymphoma and biopsy of lympho node is done. However the result is benign reactive hypertrophy. Don’ worry. It is often the case with TSW practice.
Watery eyes, stuffy nose and sneeze are not the symptoms of TSW. They happened to you at the same time.
Urticaria is the sign of the last stage of TSW. It is wheal eruption which suddenly appears, longs for several hours, disappears and repeat. It is very itchy and unpleasant but it is a hope to the exit.
Thank you again. My doctor is a PA and been very good about my withdrawal and supporting me. She said my high counts were probably the result of tsw but since my last blood-work a year ago, it was higher than then so she wondered.
返信削除My allergy symptoms are like the hayfever I used to get, mostly when I first wake up, eyes crusty and dry, all which has been this way since spring so hopefully will calm down. Also, my last unhealed area of upper legs get the urticaria often and itch worse at night just like my other areas that went through this. How amazing the body is at restoring itself! :)
Hi Dr Fukaya. I'm an english reader and i'm so grateful for your blog posts. They are good reading and very informative for us AD sufferers :)
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