Three Wonderful Mothers Share Their Story

Today, as has been the case since I was a baby (back in the 1970s), topical steroids have been the allopathic medical field’s drug of choice to treat many skin irritations and disorders. Over the last year, one thing that has caught my attention and made my heart feel sorrow is the countless children who are suffering with Red Skin Syndrome (RSS) due to Topical Steroid Addiction (TSA).  You will read about them in the ITSAN Google Forum, ITSAN Facebook page and countless blogs the parents have posted. In each case, you will find the children were originally diagnosed with some form of atopic dermatitis (eczema, etc.) or other rashes and prescribed different variations of topical steroids only to become addicted. It is not uncommon for addiction to occur in as little as 4-6 weeks of daily use.

Over the last 8 weeks, I have had the opportunity to conduct interviews with three mothers from the United States and United Kingdom. Here they share a brief description of their beguiling experiences as they care for their precious children during Topical Steroid Withdrawal/RSS.  These women are no strangers to ITSAN, they have become part of the ITSAN cheer-leading team. Often times you will find them posting encouragement and counsel on the ITSAN Google forum for other mother’s and patients posting questions and concerns.

Summary

Kelly (a.k.a. UK KELLY) has cared for her son who has suffered through Topical Steroid Withdrawals (TSW) since he was just about to turn 8 years old. He had used prescription steroids since he was around 9 months (possibly younger) to treat his eczema which IS hereditary in their family. Kelly prefers we keep her son’s name anonymous, so we will refer to him as “Boy” as she does in her blog. You may continue to follow Kelly as she documents “Boy’s” progress at: http://theboythegreekfireandme.blogspot.co.uk/

Loren‘s son, Kline, is 3 and a half years old. He has used prescription steroids to treat his eczema since he was 4 months old. Eczema is not hereditary in their family. You will find she is blogging their story at: http://klinestopicalsteroidhell.blogspot.com/

Eniko’s daughter is now 3 years old and has been treated for eczema with prescription steroids since she was 3 months old. Eczema is not hereditary in their family. Eniko is not currently blogging. Eniko prefers to keep her daughter’s name anonymous, so we will refer to her as “Girl” during the interview.

The Interview

Was your child taking antibiotics or any other medications, besides topical steroids, before developing eczema? 

KELLY: No, none.
LOREN: No
ENIKO: No

What type of steroids were they using?  

LOREN: Kline used Triamcinolone .1%, Hydrocortisone 2.5%, Derma smooth oil, Mupirocin2%, Desonide.05%
KELLY: “Boy” Started with hydrocortisone, before progressing upwards to [stronger corticosteroids like] Betnovate, Eumovate and Elecon.
ENIKO: “Boy” used Dermatop Emollient Cream 0.1 % and Derma Smooth.

How long was it before you noticed the steroids weren’t working and the skin was becoming worse? 

ENIKO: 18 months after [first use].
KELLY: When “Boy” was approx. 7 years old.
LOREN: July 2011.

What were the signs or symptoms that alarmed you?

LOREN: We ran out of steroids on a trip and his skin and itch went crazy.
ENIKO: Spreading worsening eczema. She couldn’t stop steroids more than 2 days until it came back worse and worse.
KELLY: The increasing and spreading redness, which was no longer confined to the areas that had eczema. It was spreading all over the body; also my son would be freezing cold all the time, even in the height of summer.  I was having to use more and more steroids, and was never able to step down.

How did you come to the conclusion it was Red Skin Syndrome?

ENIKO: After stopping steroids she turned red, had clear skin than become so much worse than eczema itself
LOREN: UK Kelly asked if I had heard of Red Skin Syndrome and as soon as I “Googled” it I knew, bingo, we finally had an answer!!!
KELLY: I didn’t for a very long time, but I did know something was wrong, I just did not know what.  We saw doctor after doctor, spent thousands of pounds seeing private doctors. Also my mother in law (who dealt with my husband as a child with severe eczema) kept saying to me that she had no idea what was wrong with my son, but she was sure it wasn’t eczema.  I took him off steroids and then found the Red Skin Syndrome pages, which felt like such a light bulb moment.

When did your child stop using steroids? 

KELLY: September 2011
LOREN: Feb. 26th, 2012
ENIKO: 11 months ago

For how many weeks/months/years did they use steroids altogether before stopping? 

ENIKO: 2 years.
KELLY: Over 7 years.
LOREN: 2.5 years. (But I used [corticosteroids on myself] while breast-feeding [Kline] so he had some exposure his whole life and possible in the womb.)

Is your child under the care of one or more western “allopathic”’ medical physicians?  

KELLY: Yes.
ENIKO: Yes.
LOREN: Yes, Dr. Marvin Rapaport and [a local] pediatrician.

Are any of them in agreement with the Red Skin Syndrome diagnosis?  

ENIKO: No
KELLY: My “GP” was supportive from the start, my consultant less so.  Now, [after seeing “Boy’s” progress] my consultant had acknowledged that I did the right thing in hindsight.
LOREN: Yes actually, they have another Red Skin Syndrome boy so they know about it. Any other Dr. we have gone to does not either know of or understand. The Dr. that prescribed him all the steroids “does not believe in it”.

Did they officially diagnose your child with Red Skin Syndrome or did you figure it out on your own?  

LOREN: DR. Rapaport diagnosed him.
KELLY: Mostly alone.
ENIKO: Figured it out on my own.

Have your physicians been helpful? How?  

ENIKO: No, none of the doctors here really supported me.
LOREN: Yes, mostly helpful.
KELLY: Mostly, wonderfully helpful, writing prescriptions for any creams and emollients I need, providing any wraps I needed, and any anti histamine, monitoring my son’s growth, and weight, and helping with infection.  Just [to put it in perspective] for balance a few were just awful, refused to discuss past treatment and tried to force us into using steroids.

What has the withdrawal process been for your child with regard to symptoms and needs?  

KELLY: Horrendous, life stopped totally for 4 months. But after that first awful period there has been gradual and steady improvement.
LOREN: Terrible, horrific! The worst year of our life. Steroids have taken a year from our family’s life and the pain my poor baby is in is unimaginable.
ENIKO: Horrible, she was in pain, itching 24/7 not sleeping, bed-ridden for good 3 to 4 months, hospitalized for infection, just horrible horrible…

What medication or supplements is your child taking to help them through the withdrawals? 

LOREN: Supplements seem to make him flare more. He has been on zija, Vitamin D3, cod liver oil, probiotic, colloidal silver… You name it, he has tried it, but really it hasn’t helped or it seems like it makes him flare.
KELLY: Hydroxyzine, Cetrizine, Ventolin (for the early wheezing stages), some antibiotics were needed for infections.
ENIKO: Vitamin D3, probiotics, cod liver oil, homeopathic remedies (too many to name), antibiotics twice,

What are your go-to items and/or ointments?  

ENIKO: Apple Cider Vinegar & Epsom salt in bath, Vaseline
KELLY: Vaseline, 50/50, Aveeno baths, Aveeno cream. I love the Salcura range now but that would not have worked early on.  Derma silk suits, tubi fast wraps and pure cotton comfy clothing.  Oh and Sudocrem!
LOREN: Ice packs and the bath, apple cider vinegar, cool air walks, medicine mama’s sweet bee magic ointment

Are you taking your child for any integrative, homeopathic or naturopathic treatments?  

KELLY: Yes, homeopathic.
LOREN: Not any more. When he is well enough he will start chiropractic again.
ENIKO: Yes, both.

Have they been helpful? How? 

ENIKO: They were not helpful, waste of money. Nothing helps and works for RSS.
LOREN: No.
KELLY: Not sure, jury is still out on that one.

Are you the sole care giver for your child?

LOREN: My husband and I
KELLY: No
ENIKO: No

If others help you, how many others are able to and how do they help you?  

ENIKO: My cousin helps me with nights, my mom helps with cleaning & cooking, dad shopping.
LOREN: My mother comes up one night a week sleeps over and helps clean and take care of Kline so we get a break.
KELLY: Support is really helpful; the lack of sleep for both parent and child is a killer. If you have more than one child you will need help getting the others to and from school, especially when the RSS child’s sleep is interrupted.  I found my son slept best from say 4-5AM thru midday.  Help keeping on top of washing and cooking was also great.  And I had two friends who would have my son for the odd night, so my husband and I could get some sleep.  Those few small things kept me sane (ish)…

Is there any support that you are lacking while caring for your child?

LOREN: It is very lonely. Most of our friends don’t visit much and we are always stuck at home.
KELLY: Would have liked more support from the ‘conventional’ dermatologists, early on.  It was very tiresome fighting them, when all my energies would have been better spent in focusing on my child.
ENIKO: Yes, doctor’s support – very lonely road, lacking of support of others not understanding what we are going through.

What challenges (big and small) have you faced providing care for your child?

ENIKO: The lack of sleep is horrible, makes me a different person, no energy, no life.
LOREN: Lack of patience from lack of sleep and constant stress.
KELLY: For the first four months, everything felt like a challenge, keeping up with the washing was a mission in itself.  His bed would need stripping at least daily (and in the night it would need changing again if oozy).   Even everyday shopping became impossible, as he was too ill to leave the house, so had to rely on others to either sit with him whilst I did, or others shopped for me.  Sleep was just awful.  The amount of skin shedding was shocking and it went everywhere.  And I am sure I needn’t mention the itch, anyone who is suffering with this knows how debilitating this can be.

What do you do to stay positive through this difficult time?  

KELLY: Honestly, I didn’t stay very positive at all!  But I did grit my teeth to get through it.
LOREN: Positive, what’s that?
ENIKO: Talk to people on the ITSAN [forum and Facebook page].

How is your child coping?

LOREN: He is doing better than I am. But his life is completely taken over by the flares.
ENIKO: Bad, crying, screaming. Doing better but still not sleeping and things are limited what she can do because she’s always so itchy.
KELLY: As you can imagine, it was very hard for him.  However Mario Kart was our savior!

What have been your child’s challenges (big and small) through the withdrawals?

KELLY: My son missed 4 months of schooling and a year of swimming lessons. We needed the support of the educational welfare officer and the school.  Now he has completely caught up, and in fact, got his 100M swimming badge yesterday.  Children seem very resilient.
LOREN: Sleep, pain, itch, burn, sleep!  Loss of appetite. He also started to wheeze when he breathes since going off steroids and he never had issues before.
ENIKO: Couldn’t do things that any other normal child would do, couldn’t play, go out, go to nursery school, in pain and itching still 24/7, lack of sleep, no appetite.

What are the best things that you have found to help relieve your child’s discomfort?  

KELLY: Time and cuddles.
LOREN: Ice packs and baths. TV for distraction. [We have tried some different prescriptions to help him sleep.]
ENIKO: Sitting in the tub 9-10 hours a day was the only relieve for months.

What things do you do with your child to keep them distracted and positive during this difficult time?  

LOREN: Tv, read books, when he can focus. Hug and kiss him.  Going outside for walking in the cool air has helped too.
ENIKO: TV, IPad, singing and dancing. Thank God she loves to sing, loves music. Music was the number 1 distraction.
KELLY: Mario Kart, Mario Kart and Mario Kart.  We also watched a lot of long films, Lord of the Rings, the Star Wars ones, anything he could do whilst still.

What things have absolutely NOT been helpful?  

ENIKO: Creams and antihistamines did not help her at all. Nothing helped the itching. All the money I have spent to try to help her was waste.
KELLY: So many I can’t even think of them.  For us he was too ill during withdrawal to focus on dietary changes (we had done so before anyway) and a loony homeopath was a waste of time and money.
LOREN: Pretty much everything I have bought to try to help has not helped. Everything was a waste of money except the ice packs.

Is there anything you wish you had done differently during the withdrawal process?  

KELLY: No, not really.
LOREN: I wish I could have quit my job. But in some ways it is nice to get out of the house and get a break.  I lose my patience and get angry; I wish I was more stable for him. I have started taking an antidepressant, that helps.  Lack of sleep for over a year will make you insane!
ENIKO: Yes, I wish I wouldn’t have spent so much money trying to speed it up or make her better. Sometimes I think trying too much stuff made her worse not better. I wish I would have gone out more to keep my insanity. I barely went out, quit my job and was home most of the time.

For the parents and caregivers of children just now diagnosed with RSS, what practical advice would you give them?

KELLY: Call in every favor you are owed, give all your close friends and family the information to study so they know what you are up against, and use the forums and the Facebook pages, the advice and support was invaluable.
LOREN: Your life will completely revolve around your kids flares. Be prepared to not be able to leave the house for months. Be prepared for rude comments by people, strangers and doctors.  Be prepared for you to lose it and your house to be a mess. Your relationship with spouse and friends will be put on hold and it all sucks!
ENIKO: Give it time; stop trying to figure out what makes it worse or better because you can’t. Stop spending money because there is not much to help or speed up this. Ask for help; get help with the nights to take turns. Try to get out more, even for 1 hour, just to clear your head and get away from all the itching and the pain. It will make a huge difference. Most of the time I was too tired to go out, but when I went out even for 1 hour it made a huge difference and [I was able to] start fresh again with this horrible horrible ordeal.

*** Any text in [ ] brackets denotes that the participant’s commentary was slightly edited for simplicity.

DISCLAIMER: While every caution has been taken to provide my readers with the most accurate information and honest analysis, please use your discretion before taking any decisions based on the information in this blog. The HP Esthetics and Eczemancipated author(s) may keep updating old posts on a regular basis and is not bound to explicitly state all corrections made… The interviewees’ expressions in this blog do not necessarily represent or reflect the views or experience of The HP Esthetics and Eczemancipated author(s). They have been recorded for the benefit of others who are coping with RSS and looking for answers to similar questions.