Is Your Child Suffering From Topical Steroid Addiction?

The scenario starts out almost the same for most patients.  At some point you treated your child’s eczema or other type of skin inflammation, with a “harmless”  over-the-counter topical steroid in hopes of resolving the problem.  Sooner or later, that no longer provides relief, so you consult your child’s  pediatrician only to be prescribed a  stronger topical corticosteroid cream.   That seems to clear it up temporarily, but once again it comes back, now with a raging vengeance.  Each flare up being treated with more and more steroid cream, pills or injections until finally nothing brings relief.  The skin rashes begin to intensify becoming chronic or spreading throughout the body.

Does this sound familiar?  It could be that your child is  suffering from Topical Steroid Addiction (also known as Red Skin Syndrome).  Patients may see doctor after doctor desperate for relief for their skin disorder, and in the end instead of getting help they are prescribed the very culprit of their demise, a steroid.  What is worse is that children become addicted more quickly than adults do,  since their immune system is still developing.  So, it is vital that parents be aware of their childs symptoms because, like thousands of other children, they may be misdiagnosed.

How Do I Know If My Child Is Suffering With Topical Steroid Addiction?

Skin disorders, next to mental disorders, are the second most difficult to diagnose.  However, according to the International Topical Steroid Addiction Network.  The top five signs and symptoms that could indicate your child is suffering from steroid addiction are:

1) You use or have used topical steroids regularly for a period of time that exceeds two to four weeks.  2) When you stop using topical steroids you turn red, your skin burns, swells, and maybe even oozes.  3) Your eczema symptoms are spreading and becoming difficult to manage.  4) Your physician (dermatologist, primary care, etc.) administers corticosteroids of increasing strengths, by various routes, and frequently for the diagnosis of ‘eczema,’ but nothing keeps your eczema under control.  5) After many tests for allergies and irritants you could not identify the cause.

 How Is It Treated and What Can I Expect?

Many doctors deny that this syndrome exists.  However doctors such as Dr. Marvin Rapaport and Dr. Mototsugu Fukaya have been very successful in treating and even healing their patients of this debilitating condition.  The treatment for those who have the characteristic symptoms of the Red Skin Syndrome  is total cessation of corticosteroids.  It is typically followed by a slow and painful withdrawal process. The person may experience redness and swelling (Edema) on the skin, extreme intense itching and burning sensation under the skin, weakness, insomnia, and depression to just mention a few. Some have described it as “the worst physical pain ever experienced.”  The symptoms can be quite debilitating, devastating and last for several years.  But, once the withdrawal period has passed the majority of children are 100% healed.

Interviews With Parents of Children With Topical Steroid Withdrawal

Here is an interview from Loren McCormac, a United States mother of a son (Kline) who is suffering with Red Skin Syndrome. To follow Kline’s journey from full body eczema to withdrawal to healed check out his blog at: https://klinestopicalsteroidhell.blogspot.com/

Question 1 – What advice do you have for parents who have to deal with medical opposition regarding the proper diagnosis of their child suffering with Red Skin Syndrome?

Answer: “My advice for parents is – question your doctors and do your own research. If your doctor does not support your opinion find another one. Doctors are given so much power and we have to remember that we as parents have an equal or even more amount of power as the doctors.”

Question 2 – How has ITSAN provided assistance to both you and your child?

Answer: “Without the nonprofit ITSAN.org I would have never known why Kline’s skin was not getting any better and only worse on topical steroids. I would have had to continue upping his dosages of steroids to get his full body rash under control. Kelly Palace, Joey Brown, and Jonathan Root have given me so much personal support and encouragement that Kline’s red skin will heal and one day we will be out of this hell called Topical Steroid Addiction.”

Here is the interview from UK-based Kelly Etkins, mother of her son suffering with Red Skin Syndrome. Kelly prefers to keep her son’s name anonymous; you can follow their progress on: https://theboythegreekfireandme.blogspot.com/

Question 1 – What advice do you have for parents who have to deal with medical opposition regarding the proper diagnosis of their child suffering with Red Skin Syndrome?

Answer: It is really hard to get Doctors and consultants ‘on side’ when you suspect your child has an issue with Topical Steroids, I found a few who acknowledged that it could happen but was so ‘rare’ they were hesitant to even consider it.  In the beginning I was frustrated with the lack of help, or perhaps more accurately I felt that I just was not being listened to so I got very frustrated indeed.  But then I learned it was much easier to try to get the Doctors and consultants ‘on side’ by basically saying that I would do anything they asked, try anything they felt would help, if they would just please help me.  I eventually found a wonderful consultant who agreed to help me, after I said to her that I had done every single thing for the last 7 years of my son’s life that I was told/asked to and his condition was only deteriorating, so would they at least support me in treating my son without the use of any steroids.  After several months she admitted that despite her doubts that it had indeed been the right thing to do.  

Question 2 – Since you live in the UK and are unable to travel to see Dr. Rapaport for your son’s diagnosis, how did you educate yourself to properly advocate for your child’s Topical Steroid Addiction?

Answer:  I think any parent who has a child with eczema already does a massive amount of research, I saw a motivational poster on Facebook a while back that said “a worried mother does more research than the FBI”, which I thought was so true!  I devoured every single study I could get my hands on (ITSAN.org is a great resource), and even some that were not directly related to TSW (such as studies about HPA axis suppression – they scared me something silly). I then listened to all the teleconferences on ITSAN.org. But I think the most important help was the forum. Mothers who had trod the path before me were invaluable, just to have little bits of basic advice and reassurance. At any time of the day or night I could go on there with a worry or a question and get an answer or in some cases just a bit of sympathy when things were very rough.

 

References:

Heather Petersen, Red Skin Syndrome Patient and Guest Blogger of Justglowingwithhealth.com: www.eczemancipated.com

Dr. Rapaport Paper (USA): https://dev.danrootdesign.com/eczaminer/wp-content/uploads/CorticosteriodAddictionArticle.pdf

Dermatology Times (USA): https://dermatologytimes.modernmedicine.com/dermatology-times/news/modernmedicine/modern-medicine-news/topical-corticosteroid-addiction-may-be-b

Dr. Mototsugu Fukaya (Japan) https://www.xtosis.com/atopy.htm

Indian Journal of Dermatology (India): https://www.e-ijd.org/article.asp?issn=0019-5154;year=2012;volume=57;issue=4;spage=251;epage=259;aulast=Rathi

 

DISCLAIMER:  The information provided in this article is for informational purposes only.  It is not meant to be used to treat or diagnose a medical condition. If you feel that your child may suffer with Topical Steroid Addiction please consult a qualified Health Care Professional for guidance in beginning a treatment plan. The interviewees’ expressions do not necessarily represent the views of the author of Just Glowing with Health.  They are included for the benefit of others who have had similar experiences.

6 Comments

  1. for Alison on March 24, 2016 at 1:08 pm

    Hi.
    I hope it’s ok to contact you. I’m writing on behalf of Alison Bell. She’s 32, lives in the UK, and is seriously ill and predominantly bedridden with an aquired neurological disease.

    In December 2014 she caught a bad perioral staph infection. It went undiagnosed till September 2015 and also went systemic. From then she had topical steroids to help the severe dermatitis the infection caused and was told to use them continuously, which she did for several months.

    Unfortunately she had the whole stop them and it gets much worse cycle thing which her dermatologist said meant she wasn’t ready to stop them yet so continued.

    Everything else she tried over the whole time eventually made her skin worse. She tried everything. It seems simply having any cream/lotion/oil on her skin is just too much for it regardless of the ingredients.

    So, in her research she found zero therapy. She’s been doing it and it’s very clear that the condition before the steroid cream and after, is completely different. This has lead her to wonder about steroid withdrawal syndrome and she found you.

    Firstly, she wants to send you huge love, as well as gratitude for putting your story out there in order to help others. She does the same with her neurological disease.

    Secondly, if I attach some pictures of how it’s been since the withdrawal, could you take a look and see if you think they fit the withdrawal theory? I’ll happily supply any further info etc if Alison can’t (she’s incredibly ill atm). She also has many other symptoms that accompany her facial condition including heart palpations, headaches, sore throat, nausea, temperature swings, watery diareah, sporadic purple cheek, etc.

    If you’re ok with this please pop us an email via Alison’s address and I’ll forward you the pictures.
    AlisonLouisebell@yahoo.co.uk

    Many thanks for any response.
    End of message

  2. Julie on March 20, 2017 at 4:51 am

    Hi my 18 month old daughter has been percribed hydrocortisone for the past 5 months for ezchema. It started as one small patch and spread more. It is all over both arms and legs, she suffers bright red itchy skin when I attempt withdrawal. The dermatologist has told me to continue to use it until she grows out of her ezchema with no breaks or tailoring down. She has also been diagnosed with with chronic spontaneous urticaria, and now doctors even think that the red skin is caused by this condition and were reluctant to prescribe antibiotics for an infection as they think everything is urticaria or inflamed ezchema. They eventually treated the infection. And now I have no help or support in Birmingham UK. And left to deal with my daughters Rss and doctors that are reluctant to do anything but prescribe more stronger steroids.

    • HP on March 21, 2017 at 7:29 am

      Hi Julie
      First of all, my heart breaks hearing about the intense situation you and your child are going through. It sounds so painful. I am so sorry you and your little girl are going through this.

      Christine was so kind to give me a platform to write about this steroid battle many people are going through so that we could raise awareness and direct people to the proper support and education. While we do not supply medical advice, we can give you some input and resources. Here are my suggestions:

      Go to http://www.itsan.org and join the free forum and read all of the resource info in the online forum. Also email ITSAN and ask for physician contact info in England. They have a list of physicians previous RSS patients have successfully worked with in different areas of the world.

      Next join the private Facebook groups regarding this health issue. Here are a list of the groups:

      – ITSAN Red Skin Syndrome Support Group

      – Topical Steroid Withdrawal-Red Skin Syndrome Support Group

      -Eczema & Allergies – Go Natural Health Champions Support Group

      – Parents with Children with out of control Eczema support group

      And it would be to your benefit to follow the Eczema Society at http://www.eczema.org

      Coming off of steroids is a horrific process. Everyone gets worse for months before they start to show signs of recovery. It would be to your advantage to educate yourself on this process first. (As it sounds like you have already started on that path.) Then alert your friends and family of the stages that will happen and what kind of support you’ll need along the way. Prepare by ceating a time line for a solid 6-12 months of full time dedicated care giving. Those would be necessary things you would benefit from.

      Knowledge is power and leads to wise decision making. Take your time choosing how to move forward and make yourself aware of all that is involved and the potential difficulty you will face. This way as challenges arrive you can face them head on with confidence and you will have a support team at the ready to cheer you on.

      Kind Regards
      HP

  3. […] P.S. If you plan on joining in on the challenge whether for part of it or all of it, please let us know BELOW in the comments. We’d love to hear from you! Also, if you know someone suffering from eczema or other skin conditions make sure to share this with them, we want to reach as many as possible in spreading awareness of Topical Steroid Addiction. […]

  4. Karla on June 17, 2017 at 10:53 pm

    My son suffers from eczema, Foderma serum is the only thing that has worked to clear it up, This serum seems to work for every and any skin irritation! It even smells good! Thank you so much!

    • HP on June 26, 2017 at 10:35 am

      Hi Karla
      Thanks for the tip. I’m so glad you are finding something that works!
      HP

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