Our Story – from the beginning

L’s skin and body became addicted to topical steroids used to treat his eczema and he has been going through withdrawal since June 17, 2013.  He is healing daily and will ultimately be completely healed, but steroid addiction is common and often undiagnosed.  The condition is called Steroid Induced Eczema, Red Skin Syndrome, or Topical Steroid Addiction/Withdrawal. 

Both boys had eczema as babies.  J outgrew his eczema by two years old.  L’s never resolved despite removing allergens from his diet, using creams, baths, humidifiers, natural clothing, soap, etc.  The expert dermatologist and allergist we took him to just kept putting him on different types of topical corticosteroids.  Most know of these topical steroids – hydrocortisone is an over the counter one used by most of us at one point or another.   Although I questioned repeatedly the safety of using these long term, I was reassured by the expert allergist that this was no problem.  We ALWAYS used them according to directions given – use for no more than x days (depending on the steroid this was 3, 7, or 14 days), then take a break of a minimum equal amount of time (often the breaks were for much longer than the minimum).  L’s eczema continued to get worse.  Last Christmas, 2012, the skin on the tops of his feet was so thin and fragile that the slightest rub caused a hole in the skin, so I took him off the steroid creams completely since they were no longer working and skin thinning was a documented side effect.  Little did I know what was to come. 

L looked great initially and then slowly but surely refused all creams and lotions he’d traditionally been okay with, refused baths because they stung, and became covered by a whole body rash.  By March 12, 2013, he was swollen, red, and flaking/peeling like he was a sunburn victim whose skin was peeling.  He was itching head to toe uncontrollably.  He was so swollen he looked like he’d been stung by a hive of bees.  After seeing our pediatrician, we took him to the triage unit at one of the leading hospitals for allergy/eczema in the US which, we thought luckily, was here in Denver, where our allergist (who is considered an expert) was, and was told that he had bad eczema.  We were directed to reinstitute baths and steroid creams – this time one type of steroid cream for his scalp, one for his face, and one for the rest of his body, and cover him for two hours three times/day in wet wraps after the 3x/day baths.  Despite the screaming from the baths stinging his skin, his skin and sleep improved within a few days, and we thought all was well, despite the questions that remained as to the cause of his terrible “eczema”. 

 

Within a month of instituting the new protocol, I began noticing that whenever we tried stopping the face and scalp steroid creams as we were instructed to, his face would start to swell and get red again.  I was informed that this was his eczema returning and instructed to start using the steroids again.  This also happened on his body, but the immediacy and severity of the reaction was less intense than the face.  Per the expert allergist’s direction, we were doing one to three baths daily, then applying either steroid or moisturizing creams, and applying wet wraps, depending on the condition of the skin on each part of his body.   We were exhausted.  Taking care of his skin took a minimum two hours a day to deal with. 

Image4 weeks prior to stopping steroids – The face swelling started within 24-48 hours of stopping the steroids.

When I was up at 2AM yet again in mid May with an itchy L, who the steroids and antihistamines were NOT working for, I happened upon the International Topical Steroid Awareness Network as I looked for answers via Dr. Google.  If you look at www.ITSAN.org, you will see ALL of of the medical history of “eczema” symptoms.  They were exactly what L was experiencing!  Sometime during 2012, his body became addicted to topical steroids and he had been going through withdrawal when he was swollen, red, itching and peeling in March 2013 after I withdrew the steroid creams!  And he was starting withdrawals every time we withdrew the steroids from his face!  We had our answer. 

What began as eczema as a baby had turned into a full body addiction to the cortisone given to his body daily as prescribed by his doctors.   Cortisone is a hormone.  If the body gets it from a synthetic source, such as a topical steroid, the body decreases its own production and when you withdraw the synthetic source, the body goes into chaos while it relearns what it is supposed to be doing.  The skin absorbs the steroids at various percentages:  the body generally 7%, the face, scalp, feet, genitals up to 30%.  Needless to say, I emailed and called his doctors immediately.  We have had amazing support from our pediatrician and naturopath.  Neither felt qualified to diagnose the condition, though. We could not find a dermatologist or allergist in Denver who was willing to acknowledge his condition or that the steroids could cause this addiction despite it being well documented -by the FDA and NIH, no less- that there can be steroid induced eczema, steroid induced rosacea, and that the body gets addicted to oral or injected steroids all the time.   It is listed in the side effects of the topical steroids’ inserts as affecting the hypothalamus-pituitary-adrenal axis.

 

So I took L to Los Angeles for a diagnosis June 17 by one of the few dermatologists in the world to acknowledge, diagnose, and treat the condition.  He provided a diagnosis and treatment plan, and started withdrawals- intentionally this time and according to the treatment plan- that day.  His withdrawal the second time around has not been quite so harrowing – for this I have no reason other than the BodyTalk alternative medical treatment we began giving him regularly in March.  L is incredibly itchy and up nights on a frequent basis since cortisol levels are lowest at night, but he is healing. 

Image2 weeks prior to stopping steroids – His whole body started to rebound, not just his neck and face anymore.  His back – during a rebound flare before stopping steroids completely – skin swelled, deep, dark red and welted. His face, neck, arms, and legs would look exactly like this and he would itch constantly.

We can already see stronger, healthier skin than we’ve seen in ages.  He is healing without baths or lotions of any kind – some people need these as comfort measures, others don’t as the baths or creams actually sting the skin – L falls into the stinging skin/bath is a torture chamber category.  There may be a time on his healing journey when he starts to need them again, but right now his body is healing itself.  There are scientific studies that prove that the body recovers its cortisol functioning, that the IgE levels decrease again (they go through the roof during withdrawal), that the skin starts creating its own oils again, through the withdrawal/healing process. 

ImageLegs at 2 months post steroids – MUCH more red that this – can’t get my camera to record the red very well!  This was thicker skin than he had had in over a year.

It has been an amazing journey and wake up call to question all drugs given.  L was also building tolerance and becoming addicted to the anti-histamine prescribed to help him sleep, so we took him off that since it helped with sleep less than 50% of the time.  Topical steroids are a DRUG and must be treated as such.  They are meant for short term use.  The body can become addicted in as few as three days.  They should NEVER be used on the face, nipples, or genitals as a first line of treatment, despite being prescribed for babies with diaper rash or eczema on the face, moms with breast infections, or adults with hemorrhoids.  These parts of the body just absorb too much, too fast.  They should NEVER be a first line of treatment for any “nuisance” medical issue.

The caregivers can also experience hormonal disruption and withdrawal when the steroids stop.  Since I applied the creams without gloves, and just wiped my hands after application, I had also been getting daily doses of synthetic cortisol.  I experienced a MUCH more mild withdrawal, but suffered from side effects of withdrawal such as boils, nailbed infections, and swollen glands repeatedly with no cause for several months.   Many other parents experienced the same unrelated, varied symptoms, and these are also symptoms of all the people actually going through withdrawal. 

I have found a wonderful online community with hundreds of thousands of “Red Skin Warriors” (they call themselves this due to the red shade the skin turns at various points of flares) who have assisted us through this journey.  Indeed, another boy, a year older than L and a month ahead of him in withdrawal, lives a mere five miles from us.   

PLEASE, if you have read this far, think about someone you know who is using a steroid cream to control their eczema or rosacea, and advise them to check out ITSAN’s website.  Since most doctors and pharmacists are not educating their patients about the side effects of long term steroid use (or advising against it!), then we must spread the word via word of mouth.  Slowly we are educating more doctors, and indeed finally have a couple of doctors, pharmacists and nurses who have discovered that they too (or their children) are addicted to topical steroids and began the withdrawal process, but it will be a long road to educating the rest of the medical profession and overcoming the lax guidelines the FDA has allowed pharmaceutical companies to use.  Patients must educate themselves about the side effects of all drugs they are taking and watch for those effects.

 

Image

9 months post steroids – Smooth, healthy skin.  Remaining areas to heal are the eczemous looking spots like this behind the knees, the tops of his feet, and back of heels.  Everywhere else is healed!

This feels a bit like a fantastical sci-fi story, but we have been living this daily for nine and a half months intentionally, and accidentally lived it for three months at the beginning of 2013.  L’s full recovery will not happen for potentially another two years.  Typical recovery times for kids are six months to three years (with the average time being between 1-2 years).   Adults are one year to four or five years.  It all depends on usage history and the body of the individual.  The skin always heals first, with the itching being the last symptom to resolve.  Our family takes comfort in the improvement we see daily in L’s skin, know that flare ups always result in better skin afterwards, and press on, living life as normally as possible.

Thank you for reading.  Someday I’m guessing you’ll meet someone and hope that you will think back to this letter and make a suggestion to them to check out steroid induced eczema.  This condition of addiction is much more prevalent than doctors would lead us to believe.  Most adults with “worsening eczema” are most likely addicted to the topical steroids.

If you can hold out space for L’s healing more quickly and easily any time you think of us, we would appreciate it.

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11 responses to “Our Story – from the beginning”

  1. stephanie says :

    Prayers sweet friend and bravo in starting the blog! Big step in helping others!! Xoxo.. love to you! ❤

  2. Joey says :

    So good that you are blogging and my prayers are offered as well. Thanks for all that you do to help others while in your own suffering. xo

  3. RAC says :

    His skin’s looking good! Praying for patience, endurance, comfort and complete healing for L and you 🙂

  4. ummAda says :

    Its great to see your son healing!

  5. Ruthie says :

    My two sons (4 and 1)have this and I don’t think I will ever go back to the doctor. It is so encouraging to hear that this insane itching they do every night will stop. Is there anything at all that ever helped your son with the itch? I hold them a lot at night. One asks for Aquaphor and the other hates cream. My 4 yr old’s face is swollen and crusty. I’m hoping his normal skin will come back some day. I do believe it will if we stop all steroids. Its just that waiting for that day seems like forever.

    • adventuringmama says :

      Hi Ruthie,

      I’m so sorry to hear you have two sons going through this, but glad that you now have answers. The itching is not as intense now and the duration of “itchfests” is less – sometimes just 5-10 minutes! Progress indeed! NOTHING ever helped my son with the itch – all I could do was make sure he had a layer of clothing between him and the itchy body part. So it was either something he was wearing, or he could wear a pair of socks on his hands. He just turned 4. This all started right after three, and I had to duct tape the socks to his pjs for about the first 4-6 weeks, but then he quit taking them off and started asking for me to put them on! If you go to ITSAN.org and look in their resources section, there is actually a fantastic FAQ about Itch. It’s very helpful. The recent thing has been a hair dryer blowing hot air or sitting in front of the air cleaner or vent when air is coming out. Crazy, but it works! Please join the ITSAN.org forums – they are very helpful and full of support! Our family couldn’t have made it this far without our virtual support network.

      • Anne-Marie says :

        Hello

        Thank you for sharing your journey. My 4 year old daughter has been treated with topical steroid creams for the past 3 years. Her eczema just seems getting worse and the dermatologist keeps prescribing more and stronger creams (body, face and scalp). I always asked doctors if the steroids could be causing the damage and they always answer no. I spend hours reading about the subject and just last week stumbled across ITSAN’s website. We have stopped steroids since and her condition is worse. Sleepless nights for her (and us !). Her skin is red, hot burning and itchy. She has shivers. Her skin is flaky. After all that I have read in the past week, we are conviced we are on the right track. I just hope we can find ways to alleviate the symptoms. I am worried because she will be starting kindergarden next month.

        Thank you for sharing your experience and hope that your sons are doing well.

      • adventuringmama says :

        Hi Anne Marie,

        While I am very sorry to hear that your daughter is going through Topical Steroid Withdrawal after her original eczema becoming steroid induced eczema, I am glad for her sake you discovered it when you did! Reading about teens or adults going through this is just as heartbreaking and difficult. Different challenges with different ages. I found it VERY helpful in the beginning to ask the adults going through TSW about what their symptoms felt like since my kiddo couldn’t describe it very accurately. Shivers, hot, burning skin, itchy like crazy, flaking, and lack of sleep are all normal for the stage of TSW you are at!

        ITSAN.org is a phenomenal resource and their forum is amazing in the support it provides. I strongly encourage you to go there and reach out for assistance or answers to questions!

        ITSAN is attempting to put together a plan for school and caregivers, so keep checking the IMIA page that currently says “coming soon” for those documents. In the meantime, you should contact the school to discuss implementing a 504 plan because you are going to need a care plan in place and a reason for the absences or late arrivals if you are choosing to let your daughter sleep. She’s 4 and starting kindergarten? Isn’t the starting age 5? My son isn’t starting till next year… And… kindergarten is NOT required. Many parents don’t realize this. You always have the option (assuming work allows) to not send your daughter this year.

        I wish her a very speedy healing! My son is currently coming out of a flare and looking really good for TSW! I’m very hopeful. Thanks for writing.

  6. Anne-Marie says :

    Hello again and you for your encouragement. We surely need it. First let me say, I live in Canada (Montreal) so I don’t know what a 504 plan is. Also, my daughter will be 5 in October. She really wants to start school. I am not a stay at home mom (wish I was) but am a teacher (francophone). I finish early and have the same vacation as the children do.

    I went to our very well known dermatologist here in Montreal 2 days ago. I told him that I did not want to use steroids as a treatment for my daughter’s skin condition and had stopped using them. He was very condescending and congratulated me for not treating my daughter’s skin. I had printed ITSAN’ s frequently asked questions to suggest that her reaction may be steroid induced but he refused to take the papers. As he was telling me that the treatment for eczema in 2014, is the use of steroids, I turned my back to him and put my daughter’s clothes on getting ready to leave and end the consultation. He suggested a reference sheet so that I could try and find someone else. I took it. I tried to stay polite (very hard !) I asked him what he had planned to suggest as a treatment . He answered a stronger level of TS and if that did not function, immunosuppressant drugs, requiring a blood test every month. I said no and left. He mocked me one last time and said that if she was cured, to come back and show him so that I could teach him something.

    Yesterday, I had an appointment with her pediatrician. She was already aware of what happened becaused the derm had called her right after my visit to warn her that I was refusing treatment. She tried to convice me as well, did not want to look at the papers I had printed nor hear about it and told me not to believe everything I read on the Internet. She wants to see my daughter again next week. I expect her to insist again since her skin will probably still be red, dry and flaky.

    They both made me feel (or tried to make me feel) as a irresponsable and ignorant mother. Before I found ITSAN, I had started to question the topical steroids because it did not make my daughter feel better. She had flares one after another in the past year. She was required to use Betaderm on her sclap and from her neck to toe. So I was already willing to stop since it was not working but did not think that the medication was responsible for all of the damage.

    I just hope that all of these people and stories are real because we are giving it a go ! It’s amazing to see that the symptoms decribed by others are exactly what my daughter is experiencing (lots of shivers, night sweats with wet sheets, incredibly flaky skin, red hot and burning skin, refuses baths and creams…)

    Thank you for sharing your son’s story (which ressembles our story as well). You have given me faith that we are taking the right decision and this will help me stay strong in adversity. I hope that your little one is getting better every day. I know the feeling of seeing them suffer, itch, cry, and not sleep. My dauther talks alot about her condition and wants her eczema to go away. She hides her arms , even from me, and says she looks like a cow because of her spots or that people will think she has the chicken pox.

    Take care

    Anne-Marie

    • adventuringmama says :

      Hi Anne-Marie,

      I am very sorry to read about your obnoxious dermatologist and then pediatrician visits. Unfortunately, the experiences you describe are all too common for everyone, even adults, telling their doctors they are stopping their “miracle” creams, aka topical steroids, which many have now dubbed, “tubes of hell”. The doctors aren’t even supposed to be prescribing these drugs for more than 20% of the body or for extended periods of time according to the manufacturer/pharmeceutical directions! Show them the drug inserts and ask them why it’s okay to prescribe against recommended dosages… 🙂

      It sounds like your daughter is now well on her way to starting full blown TSW with the symptoms you describe 😦 You will need a lot of patience, faith, perseverance, and support through this journey. You will experience doubt, and you will have to remind yourself why you stopped – the creams weren’t working anyway. The ITSAN.org forum community is an amazing group of people.

      You will learn to be your child’s advocate through this journey as well. It will sometimes take nerves of steel and the ability to question the doctors and give them information that directly contradicts what they are telling you, just as you have already experienced. We have had the opportunity to practice this through three ER visits since January 1 this year when they wanted to administer oral steroids for my son’s various breathing issues. We had to discuss alternatives each time. He was admitted overnight two of those times, which meant multiple discussions of us refusing steroids as a treatment option. Didn’t mean we refused treatment – meant we refused steroids. Funny enough, each and every time, they have found alternatives to steroids.

      A 504 is a legal plan for medical accommodations here in the US. Maybe Canada has something similar? I hope that you have a spouse, significant other, or dear friends who can help you during nighttimes if your daughter experiences the extreme disrupted sleep. You need to get help NOW, not in 2, 3, 6, or 12 months when you are at your wit’s end. It is a looooong journey when sleep deprivation is involved. Planning is key. You will need to work out someone to stay home with your daughter during these early days if she has days she is too sick to go to school. What a lot of people don’t realize is that our children are SICK during this time. No one expects a drug addict in rehab to do anything other than focus on healing in rehab. You really must treat TSW in the same fashion.

      Speedy healing to your daughter. Take care of you, too. Many hugs,

      Heather

  7. Emily says :

    Adventuringmama, we too are in Denver and probably visited the same doctors as you. I have learned sooo much and will need so much help with my son, T. I have been reading all of these blogs and ITSAN for 3 hours and we have to go through this withdrawal process. I am so mad at these doctors. I am going to look into a 504 plan tomorrow. T has been on steroids for 9 hellish years and I have been insane!! I know it’s going to get worse before it’s better. I’m on a mission and full of hope. This has been my mission to help him and I finally have an answer after 9 years!!! I will have to start our own blog with B/A pictures.
    Going through this process what did you use to moisturize him? Especially being in CO? I’d love to chat, meet any support we can give each other too! Thanks so much! Emily

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