Skip to content

One Mom’s Eczema Journey: To Hell and Back

From The Boy, the Greek Fire, and Me

One Mom’s Eczema Journey: To Hell and Back

I have a little boy, a very typical little 8 year old boy, who loves Football, Star Wars, any joke involving gross bodily functions and Mario Kart.

What was not quite so typical, was his appearance in October 2011.

My boy was a scarlet red all over his entire body (with the exception of the palm of his hands that remained glaringly white) the skin of his neck had gone and you could see what I assumed to be the capillaries underneath.

Sections of his body were bleeding….weeping, but never scabbing. His hands and ankles were swollen, and his eyes were puffy.

Sometimes the redness would go a mottled purple color, which frightened me. All his lymph nodes were up over his whole poor ravaged little body.

He could not walk. He could not even turn his head. He could barely eat as opening his mouth became too difficult and his ears hurt constantly.

He shivered no matter how hot the house was, I could walk around in shorts and a t-shirt and the poor boy would be swaddled on the sofa under blankets.

The weeping some days was unreal, it would literally run off him, sometimes so much around his eyes he could barely even see.

Now reading that I guess the assumption must be that my boy must have been ill? Perhaps you would think to look at him he had been badly burnt?

Well what would you say if I said that the dermatologists considered that my son just had ‘Eczema’.Incurable, extensive, badly managed Eczema?

What my son had, was not Eczema, it was Red Skin Syndrome.

I guess our story has been a typical one for many patients with Red Skin Syndrome, my son was diagnosed with Eczema under a year old, it was no big deal, we were prescribed various emollients, and a tube of 1% hydro-cortisone, we had various allergy tests done, we saw dieticians, nothing showed up, and using the hydro cortisone the eczema went away beautifully.

Then over the next few years, the eczema was always there in the background but never an issue, by the time he was 3, the 1% was no longer strong enough and we moved on to 2.5%, always stepping up and stepping down diligently, as we were taught. Again the eczema was well controlled, not an issue, not a problem. Perhaps I spent more time with him than I did with my daughter, the whole bath/cream/dress thing took a bit longer, it may have been inconvenient but not an issue. By the time he was 5 again the eczema was becoming harder to control so we stepped up again, and then when he was 7, we stepped up again.

By March 2011 something was clearly wrong. No matter how much of the steroid cream I used, nothing would clear it, at this time we were using betnovate and eumovate, and still the eczema was spreading and getting worse. My son was cold all the time and the lymph nodes became enlarged. I went back to the doctor in a panic, and this time we were prescribed our first course of prednisilone, I didn’t want him to have this but the GP assured me it was the best way, and that they would arrange for me to revisit my dermatologist.

Between then and September 2011, my son had 4 tapering courses of prednisilone, we were prescribed more steroids, we kept going back to the dermo’s by this point I was begging for help, I would sit and cry in the doctors office. About this time the dermo’s decided that perhaps they would try the immuno suppressant drugs, and I came home with a tube of pro topic but I was uneasy. I asked repeatedly if my son may have developed an allergy to the steroids, as I was beginning to make the association between the increase of steroid use and his deteriorating condition. I was told I being ridiculous, it was unheard of, that it must have been my fault, I wasn’t using the steroids correctly, I wasn’t using enough. Instinctively I knew something was amiss, I cried myself to sleep at night scared that he had some kind of awful undiagnosed illness.

That September I decided enough was enough and stopped all Steroid use, we tapered down our last course of prednisilone, and my husband and I decided from that day onwards we were going to try and keep away from the steroids just to try and see how my son would be without the use of any kind of steroids.  To say what followed was a shock would have been the understatement of the decade.

At some point soon after I stumbled across Kelly Palace’s website, with the links to Dr. Rapaport’s research, and it was a real Eureka moment, it was a massive relief for me to see that actually my boy wasn’t ill, he was just going through topical steroid withdrawal and addiction.

Although the change wasn’t overnight, it was pretty quick, you do get some very alarming symptoms I would say within a couple of weeks, and it is only fair to say the withdrawal is truly hideous.  Thankfully children tend to do better than adults, but you are still looking at roughly a minimum of 16 weeks of total, unmitigated Hell.  It begins with the skin becoming red everywhere, even in places where you have never used steroids or previously had eczema, it is accompanied by problems with regulating temperature, very swollen lymph nodes all over the body, some people get very bad oedema, (thankfully we only got some of that), and copious and hideous weeping.  The fluid would literally run off him in rivulets (again not everyone gets that), once you have got through that phase you progress to the shed, when masses of skin will come off, this is very uncomfortable and tight, and it can also be accompanied by joint pain.

Obviously with children the chances of infection increase, as by their very nature, kids will scratch and rub.  Atrophy is pretty spectacular too. We literally did not have one good day for 16 weeks.   Basically these flares repeat until the body learns to regulate itself.

Initially I tried to keep him at school but it just wasn’t possible, so he missed three months of schooling.  The impact on a family cannot be underestimated; we had no life whatsoever for 16 weeks, just hospital and doctor visits.  The change for the better is very gradual, one of the founders of ITSAN likens it to watching hair grow, you do not see it happen but it does all the same.

Thankfully the support of Kelly Palace, our family GP, and the ITSN support group was invaluable, however it has left me angry that this syndrome is not widely acknowledged. I only had one dermo even admit that it existed and even then she said that my son could not be suffering with it as it is so rare.  And actually the response from other parents (whom also had children with eczema) has been shocking, at times I was labeled ‘deluded’, ‘abusive’ and ‘neglectful’ for making the incredibly hard decision to withdraw the steroids, with the awful foreknowledge of what was likely to come.

A drastic improvement! He’s still healing.

And therein is the rub, I don’t think actually it is rare. I think it is far more widespread than the medical community can recognize, and until more forward thinking and enlightened Doctors recognize this, there will be more people suffering with ‘incurable’ Eczema.

To add as a postscript, We are now into our 8 month of withdrawal.  Boy now looks pretty normal, he still has eczema and some scratch damage but is living life again to the full without his skin holding him back, his skin is better than it ever was even whilst still on topical or oral steroids, and actually I am pretty confident even the ‘bad’ areas like the wrists and hands will be much better in time.  The flares still happen occasionally, and it is annoying when they do, however each flare is shorter than the last.

My son will always have eczema, but he will no longer be defined by it.

31 Comments Post a comment
  1. for Alison #

    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

    Like

    March 24, 2016
    • Hi there – I’m so sorry to hear about Alison’s condition. I think it’s best she contacts ITSAN – the topical steroid withdrawal non-profit. They will be able to help point her in the right direction for sure.

      Like

      April 13, 2016
  2. passerby #

    I have eczema for the past 12 years of my life and it is getting worse every year. Tried a lot of method but couldn’t seem to manage it. However to an eczema sufferer, your last sentence was really inspiring. Somehow made me tear a little. “My son will always have eczema, but he will no longer be defined by it.”

    Thank you :’)

    Like

    December 11, 2015
    • Thank you so much for your comment. I’m very sorry to hear how long you’ve had eczema. It’s such a frustrating condition, so my heart goes out to you. I can imagine how difficult it must be to just never see the results you’re hoping for. I’ve dealt with that in my son as well as with my own health conditions, but we haven’t given up yet. I am hopeful we find a way. Don’t give up!

      Like

      December 15, 2015
  3. Rebekah Baharestan #

    No bow mentions skin patch testing…. I am about to go under a 48 hour 200 chemical testing sequence- methylisothiazolinone (preservative biocide fungicide ) is currently in at least 10% of all liquid products including cetaphil restoraderm and almost all lotions creams…conditioners! liquid handsoaps! detergents dish washing liquids etc… Please be sure that you’re not missing that allergy, it’s extremely damaging to skin and looks like excema but us actually an allergic contact dermatitis that develops slowly and then invades immune system

    Like

    November 23, 2014
    • Wow! That sounds like scary stuff! We only use products made form small suppliers, that we carry in our stores, and none of them thankfully contain this ingredient. Thank you for bringing it to our attention though. Jennifer

      Like

      November 25, 2014
  4. Rplee #

    Wow, great to hear your son is finally healing! I just stopped my steroids 3 months ago, have been going to school with a horribly red face ever since… But great to know what I’m actually dealing with now, and that I’m on the road to recovery. Thnk u, your blog really helped me! 🙂

    Like

    October 15, 2013
  5. Sherry Good #

    Thank you so much for this information, I have experienced this same thing!! Now I know what it is and that it will clear and I am much relieved. Thanks again.

    Like

    March 5, 2013
    • Hi Sherry – I’m so glad it was helpful to you. Good luck with your eczema.

      Like

      March 6, 2013
  6. Hi. I just wanted to let you know that it was your blog that helped me understand my sons suffering with RSS/TSW. How awesome to finally have some clarity! I was researching what to do for “weeping” eczema, it had taken a turn for the worse starting in Nov. 2012. I felt that there was something more going on with my 2.5 year old. I finally decided to stop the cream(s) and his other allergy medication and start from scratch…no pun intended. None of them seemed to provide him with any relief and I though maybe he was reacting to an inactive ingredient in one of them. Btw, we have a Pediatrician, Allergist/Immunologist, Dermatologist, and a homeopathic MD. We have a pending appt with a new Dermatologist on May 30th. I can’t wait! It seems so far off, hopefully we won’t need the appointment because my some will have recovered by then. This RSS has rocked our world! I may very well start my personal blog about it to help provide some emotional catharsis. Lol! Thank you for your blog.

    Like

    March 4, 2013
    • Hi there – I’m so glad the blog helped you determine why your son’s eczema continued to worsen. Luckily we didn’t have to go through steroid withdrawal with my son, so I cannot imagine how difficult it must have been for you. Hugs and cheers to you for helping your little guy get through this! Jennifer

      Like

      March 6, 2013
  7. Morine #

    I think you did the right thing when you decided to quit steroids. Steroids can be useful when treating eczema, but if you use it in large quantities and on large areas, they do cause problems, and the skin gets worse. My daughter was prescribes 2.5% hydro cortisone cream at 2 months because of eczema, I never used it! She cleared up with babyganics eczema cream. All was happiness until she started solid foods at 5 months, she touched bottom then, it was incredibly hard to take care of her. We had to look after her 24/7 to prevent her from scratching. Could not even take her to the store before she will be scratching all the time. It was very painful and hard go through. At 8 months I gave up all moisturizers and natural things. I tried 0.5 cortisone cream, it cleared up, but it came right back when we stopped using it. So, I stopped. At 10 months I tried the 1%, same thing it cleared, it came right back afterwards. NO more I said!!!! I took her to an allergy dr. She has an extensive list of food allergies such wheat, eggs, almost every fruit, peas, etc, etc. The dr. said that she has more food allergies than the average baby with eczema, it was very hard to swallow the news. But he is 13 months right now and she ECZEMA FREE. She still scratches a little during the day, not because of the eczema but because she is used to doing so. That is the way she tells us she is hungry, sleepy or upset. Little by little we are working on making her understand that there are other ways to let us know she wants something. She is getting older and she is getting better at that. She still has very sensitive skin, I have to be careful with everything. We don’t even let anyone carry her if that person did not wash his/her clothes with the organic detergent that we use (babyganics). She still has small flare ups but nothing compared to before. It is very had to take care of a baby with eczema.

    Like

    January 29, 2013
    • I’m glad you enjoyed reading Athena’s story. We found the same thing with steroids – the eczema just kept coming back. Like you, food was mostly to blame. Congratulations to you and your family for figuring out all your daughter’s eczema triggers and for helping her lead and eczema free life. She’s lucky to have mother like you.

      Like

      January 30, 2013
  8. Julie Lunt #

    My son is on constant medication and creams 4 strengths of steroid, bath crams special soaps etc and I fell every time I bring him down through the stages of steroid within a day or two of being completely clear (by the way I am always moisturising him whether his skin is clear or not) he reverts back to square one with the flare ups ? Now your son is off the steroid creams do you still use a moisturiser or has that stopped too ?

    Like

    October 16, 2012
    • kelly ekins #

      Hi Julie,
      Yes we still use moisturiser daily, although now only on the normal ‘eczema’ places like his hands and wrists, and the back of his knees. I guess I am of the opinion, that children with eczema need to keep their skin well moisturised to avoid cracking. I know like so many things though, opinions differ!
      Good luck Julie.

      Like

      October 17, 2012
  9. Elizabeth #

    Thank you so much! I am 29 years old and going though the exact same thing! Unfortunately at this age looks matter to everyone much more so people think I’m dying.its hard and hurts like hell! It’s on my face so I get stared at like you wouldn’t believe.your story will help me get through the cry’s. I have been on steriods since I was 4 so who knows how long it will take me to heel 😦
    Thank you again soooooo much!

    Like

    August 27, 2012
    • kelly ekins #

      Elizabeth, I am so sorry. You are right it does hurt like hell, and I would believe how people stare. Good luck to you, hope you make full use of the support groups and forums, they help so much when things are bleak.

      Like

      August 28, 2012
  10. Wow, thank you so much for sharing your story! As an acupuncturist, I see people dealing with the effects of steroids on a regular basis, whether they are topical, inhaled, digested, or cortisone shots for pain. Often they only seem to make the condition worse in the long run. The withdraw symptoms give the illusion that the steroids were actually ‘helping’ when all they were doing was suppressing the symptoms in the first place! I’m so glad to know that your child is doing better.

    Like

    July 9, 2012
    • kelly ekins #

      Naomi, I think you have hit it on the head there, that is one of the most concise descriptions I have seen, they do indeed ‘give the illusion that the steroids were helping’, It was an awful and hard road but it was so worth it.

      Like

      August 28, 2012
  11. the speech monster #

    thanks for finding this post and sharing it here. i literally had goose bumps from reading it. incredible story of willpower and hope.

    Like

    July 4, 2012
  12. Wow! I am a mother of a food allergic child who had minimal eczema as a baby but I had to comment after reading this post. I just want to say that the incredible strength that you show for taking charge and knowing when to listen to your “mommy voice” is awesome! I am sorry your family went through this ordeal but I am so happy that you have all had a healthy and peaceful outcome. Best wishes to you all and thank you for sharing your story to help others.

    Like

    July 3, 2012
    • kelly ekins #

      Tracey, Thanks so much, it does mean a lot. I guess we all can suppress intuition at times, especially when told by doctors that we are being stupid, and actually I have found some of the harshest critics to be other mothers. But it was a hugely traumatic time for us, and I do feel so strongly that this could and should have been picked up so much earlier by the docs and derms I really want to get my story out there and help as many as I can. I am so grateful to Jen for posting this as I know it is still quite a controversial subject for many, but sometimes it is necessary to push the envelope to help others .
      Good luck Tracey.
      Kelly@theboythegreekfireandme.

      Like

      July 4, 2012
  13. Wow, just amazing. Thank you for sharing!

    Like

    July 3, 2012
  14. Hello
    I have a daughter with Eczema, she is 23 and she has not spent a year in her life that we could call normal. Her life has been one crisis after another, she did very bad in school, no one understood what hell she lived through, and so she goes on…..but that fucsia color appeared when she turned 19 and from then on she rarely is her normal white rosy self. We have gone through hell and last year she had two rounds of Mabtera, quimio theraphy….does anything work for her…I only see little change…her skin is much stronger, has her alergy gone, no, it has gotten worse, is she a cortisone cream addict, reading your story I think so…. and we have given her only cream cortisone that was percribed to us in the Boston Children Hospital, when we took her when she was 5 years, no oral cortisone, but even so she still is smaller than she should have been… When she was 18 most of her skin came off, literally, and she was given oral cortisone to control it… since than, every year a couple of cortisone cicles, cyclosporine treatment until she became fuscia, and stop, trial and error with every drug, nothing works, but her itching has gotten worse, she has spent 6 months wonderfully, we thought she finally was on her way to having a normal life,,,, we were wrong, she is back to having terrible crisis, and she is exhausted, we are exhauste, all we want is to give her life back…Her allergy level is too high, Ige over 2000, and rarely does it get to 1800 level…so she reacts to everything, dust, mold, dogs, cats, heat, soaps, detergents, perfumes, etc… we tried homeopathic for 6 months, didn´t have any real relief, the doctors are scared to give her any drug…she turnes fucsia, but her itching drives her crazy….. thank you for your story, I will be talking to her doctor , and what creams can she use for her very dry skin…..she uses petrolatum…
    Carmen Carrión, I am Irene Orellana´s mom we live in Quito, Ecuador, at almost 9000 feet above sea level, the coast is to hot for her.
    Thank you.

    Like

    July 3, 2012
    • Carmen – I cannot imagine your daughter’s suffering over the years. I hope this blog helps provide you with some relieve and possible some ideas for her to try. I didn’t see you mention anything about foods – does she have any food allergies? Remember that blood and skin testing may come back with false negatives or false positives. A food challenge is the best way – that’s how we identified our son’s food allergies. My heart is with you and I wish you both the best of luck in finding the right treatment. Jennifer

      Like

      July 3, 2012
      • No she does not have food allergies, she was tested for more than 400 items in a blood test, and none were foods that she ate, but we know that she has to contro all atificial ingredients in foods, we grow the vegtables that we eat, with no chimecals, she tries to eat organic fruits and vegetables, but sometimes it is very hard to keep the chemicals out. She its few gluten foods, only rice and patatoes, But when she has the allergic crisis is usually because she was around animals, in others peoples houses, restaurantes, movie theaters, farms, after it rains or someone gave her their clothing. We have traveled around our country and the hot places are a nightmare, the tropical places have too much vegetation, the beach is o.k but the sand stings her too much, we have active volcanos in some places and that was horrible, once we had to take out of the city for a month and missed school. We have traveled to the USA and other countries, some have been great for her, the climate etc.. but some haven´t. So to answer your question we are not so sure, so much causes her allergic reactions that it is confusing for all of us, since their are only a few cases in our country as severe as Irene´s case. I try to read all of I can, and we are willing to try anything, our doctor agrees and we talk alot since she is a very special case here in Ecuador. <plus we our know battleling with her cornias,since they have
        been deformed becuse of her allergies.
        thank you for your response, any susgestions are well receibed.
        Carmen Carrión

        Like

        July 3, 2012
      • kelly ekins #

        Carmen I am so so sorry to hear how you and your daughter have suffered. Honestly I would not like to say if your daughter has it or not, but it would certainly warrant further investigation. You also mention your daughters fatigue, something that is again not often mentioned is how the adrenal’s become compromised when using oral or topical steroids, that again is something that perhaps you could investigate. I know of a couple of mothers with teenagers who are going through similar issues now. I guess I would suggest your first port of call would be ITSAN, try and read as much as you can, and then go and see your GP and have a chat with them. I would also echo Jennifer, whilst food allergies have not been an issue for us, again that could be another thing to investigate further, as Jen has said the tests are not the most reliable way for checking, a challenge and eliminate diet perhaps would be the best way forward for you there. I know as a parent how incredibly hard watching a child suffer can be, I wish you all the best in finding some answers to your daughters suffering.
        With love Kelly@theboythegreekfireandme.

        Like

        July 4, 2012
    • Rochelle Sliwinski #

      Hi Carmen…have you heard of what this mom’s son is going through, and that it could be possibly what your daughter is going through? It is called Red Skin Syndrome caused by Topical Steroid Addiction. You can visit http://www.itsan.org to learn more. I got worse and worse, eczema spreading, only for doctors to give me more steroids, and subsequently getting worse. It was a nightmare. I stumbled across the ITSAN websites about Red Skin Syndrome and found that was exactly what I was going through, thank God I had finally found my answer. I have been off topical steroids and any immunosuppressants for 14 months now. It was extremely hard the first 6 months but I am much better now. About 70% healed. I wish your daughter better health and healing!

      Like

      July 3, 2012
      • Thank you for your suggetions, and thank you for sharing your story, and to Jenny for sharing the story of the mom´s son going through with what my daughter went through all her life. It is nice to know you are not alone in your childs battle to be cured,, and find a place to read and talk about this allergies, that in my country very few people have it on the skin and no one seems to care much for them. The ideas help in many ways even if the child or joung adult are not the ones talking, all they want is to forget and wake up one morning and be like everyone else, when she had almost all her skin come off when she was 18, I told her that it was another battle that we had to win, and she answered, mom I am getting tired of fighting them, I don¨t want to do it anymore. It was the first time in her life that she said how she felt. She never knew how life is with out being ill and does not know how to live in good health. That is how my child feels, she hates creams, she wants to use make-up, wear what ever, go any where, be independent, and grow up. But us parents must be their to do the other work, seekhelp,inform of all alternatives, and be there for her .Thank you again for your wishes. Carmen Carrión

        Like

        July 4, 2012
    • Jan #

      Sea water is a natural healer of exzema. I had it bad myself, i found when i went on family holidays i would go in the sea and it would work wonders. God put natural sources on this earth, we need to use the more. Pharmacuticle companies are buisnesses at the end of the day, the interest of healing is not there priority. Repeat visits is how they stay in buisness. Therefore researching natural ways to treat exzema is best, aloe vera is liquid gold when it comes to treating savere skin problems (research online). My advice stay strong, don’t soley rely on the health system, try researching natural ways to treat exzema. All the best.

      treating and healing skin related problem (research it). My advice stay strong and don’t rely on the health system to help

      Like

      June 3, 2014
      • Hi Jan – Thank you so much for the comment. Many people do experience great benefits from sea water – but for some it’s too painful and irritating. It’s so fascinating and frustrating to see how everyone’s eczema is so different. I sure wish there was one cure all – as I’m sure you do too! Very happy for you that you’ve gotten control over your eczema naturally. Jennifer

        Like

        June 4, 2014

Tell us what you think...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: