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Our Eczema Trials – Cortisone

Ahh, everyone seems to eventually take a side on this one – to apply cortisone or not. I now lean heavily on the avoidance side, but didn’t start out that way. I know that cortisone can help some children or adults for short periods of time, but if eczema continues to be a problem even with the help of cortisone, then more than likely there is something else going. The eczema triggers need to be identified in order to treat the cause, not just the symptoms.

Here is our cortisone story….

Just a few of the topical steroid cortisone creams we tried.

The eczema started mildly enough

Like most new parents as soon as a couple little red patches of skin appeared on my three-month old’s skin, we met with the pediatrician who immediately diagnosed Tristan with eczema and prescribed a mild dose of cortisone to apply topically. Like magic the mild eczema went away completely only to come back as soon as we took the mandatory break as prescribed from the doctor. We started then stopped the steroid application multiple times during a two month period. Then the steroid became less affective. When we took a break his eczema would come back worse. At this point we were seeing a pediatric dermatologist at the children’s hospital who prescribed stronger cortisone. Sure enough, it worked, for a short while. Then the eczema continued to worsen even during cortisone treatment periods, not just during the breaks. Again, the dermatologist recommended an even stronger dose. I asked about food allergies and the dermatologist said it was extremely rare that food could cause eczema flare-ups. She also said she could instantly tell by looking at my son’s skin that his was certainly not related to food. Years later we determined food is a big trigger for our son…go figure!

Crossroads – to continue steroid treatment or not

At this point my husband and I began to seriously have doubts about the steroid treatment. If the physicians wanted to just keep increasing the strength of the cortisone, then where would we be in one year, five years, etc? I could not imagine months of steroid treatment, must less a life time! What would that do to his skin? I had read side effects could include thinning of the skin, stretch marks, and infections. If it’s continuously absorbed into the blood stream it can cause hormone imbalance and in rare cases even stunt growth. Of course to have these types of side effects we’re talking about long-term usage of a pretty strong steroid dosage. But, still. I found it to be all too scary. Since the physicians just wanted to up my son’s dose weren’t we potentially heading towards the strong stuff and probably the long-term path? Also, many kids with eczema experience weepy, oozing skin, and most with moderate to severe cases experience bleeding from scratching. It seems that the cortisone could much more easily be absorbed through this type of skin and right into the blood stream. No?

Moving on & treating the cause/eczema trigger

Bottom line is we stopped using cortisone as it didn’t help my son. When we stopped the steroid treatment we started looking for his triggers and thankfully were very successful, although it wasn’t easy. Today Tristan is on some homeopathy drops (which I was VERY skeptical of until I saw they helped) as well as some supplements and multiple dietary changes. We eat organically and clean with all natural products like soap nuts, vinegar, and baking soda. As most of you know, he’s 95% better today. Still trying to make it 100%.

What have been your experiences with steroid treatment for eczema? Have they helped or further aggravated your or your child’s eczema? How long did you use them for? Have you noticed any side effects?

55 Comments Post a comment
  1. Jenni #

    When my son developed severe eczema at about 5 months of age, a friend of his grandmother’s, a retired dermatologist, warned against using steroid creams. He had prescribed them throughout his career but had grown to realize that they didn’t cure eczema and most children he saw came back regularly.

    Desperate, I then visited a naturopath or homeopath who explained that problems in the most outer organ – the skin – are the body’s way of expressing or expelling dis-ease (I don’t think they were her exact words – something to that effect). She explained that if you suppress the bodies natural healing mechanism – inflammation – it has to express the dis-ease in more internal organs, like the lungs.

    Her recommendation was to allow the inflammation (eczema) to run it’s course – she gave us some drops to help the process.
    While a couple of his friends who also had eczema went on to have ongoing problems, and one developed asthma, after 5 weeks of pain – and gentle support and nurturing – my son has never had another bout of eczema, no respiratory problems, allergies, etc. He’s now 20.

    Yes, it was hard to watch him suffer for those 5 weeks but I’m extremely grateful to the retired dermatologist who sent us looking for other solutions.

    I’m sure I’ll be howled down for this but my worry is that cortisone contributes to the onset of other allergies, rather than the prevailing thinking that some children are just prone to allergies.. I wish there was some research on this.

    Like

    August 29, 2015
    • Hi Jenni – Thank you so much for your honest story. I do believe that steroids are just a bandaid solution and they can cause quite a lot of damage with long term use. I’m glad we stopped them when we did. Curious though, what were the drops you were prescribed? Jennifer

      Like

      September 8, 2015
  2. diana d #

    hi

    i am really desperate for an answer. my baby girl had a reaction when she was one month because of changing formula so she was prescribed advantan and hydrocortisone. 7 days later her skin was clear. after that i was so nervous to the point that when i see a rash i put the hydrocortisone. she is almost 5 months and i want to stop the steroids. how do you know that your baby is going through steroid withdrawal? her face was so dry yesterday and her skin was so thick and as iff it was burnt after applying an ointment moisturiser so i had to apply steroids. Moisturisers are not working with her. shes having a reaction from them. vaseline made her face worse. dermeze ointment is good for her body and was good for her face but all of the sudden it started to give her the worst flare up eva.

    Like

    August 11, 2015
    • Hi Diana – I’m so sorry to hear what you and your little girl are going through. I’m not an expert on topical steroid withdrawal. I’d recommend getting in touch with the non-profit ITSAN.

      Like

      August 17, 2015
  3. Kristin #

    Thank you for sharing your story. My son is 26 months and we have a very similar history and I have recently decided to completely stop steroids as it has just made him worse and worse. He is currently in quite an uncomfortable state of what I believe to be topical steroid withdrawl and I’m scouring the Internet looking for stories that help me know I’m on the right track.

    Like

    March 16, 2014
    • Just follow your gut and you’ll find the way. Mother’s intuition is very rarely wrong.

      Like

      March 18, 2014
  4. stephanie #

    Do you mind sharing the homeopathy drops you are using? Thank you

    Like

    March 30, 2013
    • Of course not. We used Homeodel 43 and Dr. Reckweg R23. He no longer needs them, but they worked really well for us in the beginning. He also took Moducare Immunoplex, also seemed to help and no longer needs.

      Like

      March 31, 2013
  5. Hi Jennifer, great post ! Another blogger recommended your site to me. We have just recently started taking steps to find an alternative to steroids in the treatment of our 3 year old’s eczema. Since she first saw her paediatrician about her eczema, I don’t think a day went by for 8 months without us applying steroid ointments to some part of her body. (no breaks recommended). The final straw for me was when I was advised to treat her eyelids with a mild hydrocortisone and I also left the doctor’s that day with yet another stronger potency ointment cream for the other areas. We are trying homeopathy, and her skin has been worse generally than on steroids, but I’m still relieved that we are coping at least with out them. I’ll be perusing your blog entries to read about your son’s progress, thank you, Catherine

    Like

    March 24, 2013
    • Hi Catherine –

      Welcome and thanks for stopping by. It’s just so horrifying to hear the doctors are prescribing cortisone without the necessary breaks. I’m really sorry your son is having to go through the withdrawal process – from what I hear, it’s extraordinarily hard. Hugs to you and your family. You’ll get through this and he’ll be so much better. We had quite a lot of luck with homeopathy – Homeodel 15 and Dr. Reckweg 23 I believe, made specifically for eczema. Good luck! And please let me know if you have any questions and if I can help in any way. Jennifer

      Like

      March 26, 2013
  6. Chris #

    It’s been almost seven years since I started to use steroid cream for my severe eczema problems and seriously I had never lookin back!!! Since i started to use the cream 3 or 4 months after itchin and bleeding stopped and all the wounds were gone This steroid cream really increased the quality of my life the only problem was if i stopped to use the cream eczema will comin back in a more serious way.I’m 23 years old btw and I been dealin with eczema for my whole life

    Like

    March 9, 2013
    • Hi Chris – I’m glad the cortisone has helped you, but the fact that the skin gets much worse when stopping the medication is a little worrisome. Do you take it non-stop or do you give your skin breaks often? I personally don’t have experience with it, but there has been a lot of talk about red skin syndrome lately online. It’s basically an addiction to topical steroids and what you described – getting worse when the steroids are stopped AND continual usage of the steroids – are two big symptoms. It’s worth looking into maybe. Regardless, I’m happy that you’ve found some eczema relief.

      Like

      March 10, 2013
  7. Cathy #

    Hi, I have a 3, almost 4 month old on mar 3, who was diagnosed with eczema. When my doctors recommendations of cetaphil and Vaseline didn’t help, we were referred to a dermatologist. We were given the Aurstat kit and a steroid cream. DD screams when we apply any of it except the recommended Aquaphor! I am at a loss. I don’t know if I should continue, go to another dermatologist, or go off on my own, but I wouldn’t know where to start! Any advice?

    Like

    February 22, 2013
    • Hi Cathy –

      Poor little girl! Those creams must really be irritating her skin. I’m not a physician, so I can’t really give out medical advice. And I do need to tell you that every child is different in their requirements for eczema treatment. But, what I would in your case is try wet wrapping with Aquaphor and drop the steroids. http://itchylittleworld.com/2012/03/20/our-eczema-trials-wet-wrap-therapy/ If you want to try something more natural you can try virgin coconut oil to replace the Aquaphor.

      Then I think you need to work with a nutritionist on an elimination diet for yourself, since I assume the baby is exclusively breast fed at this point. With a child of that age, you want to make sure you get the proper foods and nutrients if you start eliminating foods from your diet. http://itchylittleworld.com/2013/01/08/our-eczema-trials-elimination-diet-how-you-can-do-it-too/ At the very least you need to try to eliminate ALL dairy and gluten. I’m sure you’ll see improvement.

      Good luck! Please let me know how it goes! Jennifer

      Like

      February 25, 2013
  8. JK #

    Thanks for the info re sugar and alcohol as this unlocks an area not widely talked about when going through TSW…..many thanks…JK

    Like

    November 7, 2012
  9. Nice blog! I read this article and i learn a lot!

    Like

    August 21, 2012
  10. I feel like we tried every type of steroid/non steroid prescription out there, mostly out of sheer desperation, but none of them worked. I hated using any of them, especially if we saw no changes. We even resorted to pro topic for exactly 3 weeks, as the allergist recommended. It did nothing so I quit as soon as 3 weeks were up. The three biggest helpers for Isis (besides eliminating his food triggers) was treating him for yeast overgrowth, LDA shots (still do them) & Traditional
    Chinese Medicine (this was biggest contributor to clearing him up. It’s such a horrible struggle our kids & us have to go on, I’m just relieved that we take the time to research other treatments, if we had taken our doctos advice we’d still be applying liberal amounts of steroid creams & probably without any positive results.

    Like

    May 11, 2012
    • Hi Breanna – You’re right, steroids aren’t for everyone. I’ve been very interested in the Candida diets for yeast overgrowth. I’d love to hear more about your experience with that and LDA. And you are not the first person I’ve heard about with great success treating eczema with Traditional Chinese medicine. I’m so happy for you that you’ve found a great combination of therapies to help your little one! Jennifer

      Like

      May 11, 2012
    • In response to one of the posts re: Chinese medicine being the most helpful – I 100% agree – we had the same success with our daughter. Sometimes going back to the most natural is most effective in treating certain diseases without causing more harm and negative side effects – getting to the route of the problem and not just suppressing with steroid creams. We used something called ‘Hay Fairy’ with my daughter and i do believe it helped tremendously. The active ingredient is an ancient herb called Artemisia (known for the treatment of malaria). it is quite benign and no side effects have been reported from using it. I believe it helped tremendously with the itch and helped to build our daughter’s immune system back up. So I thought I would share if anybody else wants to look into an alternative treatment besides steroid creams – the company who seels this stands behind all their products with 100% money back guarantee. http://www.noorherbals.com/Allergy.html If anybody has any questions re: how we used it for my 3 1/2 year old daughter because it is quite bitter, feel free to email me at: kookmuh@gmail.com. Thanks and best wishes to everyone on here.

      Like

      May 11, 2012
      • Thanks for this info. I’ve never heard of Hay Fairy. Really interesting – I’ll look into it a bit. Jennifer

        Like

        May 14, 2012
    • Melissa Hope #

      We have just adopted a little 2 year old with severe eczema. One thing we haven’t tried is Traditional Chinese Medicine. Can you give more details into exactly what they gave your child??

      Like

      February 20, 2013
      • Hi Melissa – I’ll forward our email to Breanna, who wrote the guest post and did try Traditional Chinese Medicine on her son. I can also tell you that The Eczema Company is about to start selling a series of ointments made with natural, non-toxic, and Traditional Chinese herbs. The products are arriving by next week hopefully. I hope you find some relief for your child. Jennifer

        Like

        February 21, 2013
  11. Wow! I had no idea there was such a thing as steroid withdrawl…this puts a whole new perspective on my son’s eczema! My son has battled eczema since he was a couple months old. He is now coming up to 16 and has greatly improved…he is off all steroid creams. As a child, I felt food was a trigger…although dr’s would not support my claim. My son experienced the head to toe break outs, oozing, skin infections…the works. He was put on strong steroids,oral steroids and Protopic that worked for a time but never fully rid him of his eczema. I am not sure what was the ‘magic formula’ but he underwent light therapy under the direction of a dermatologist in grade 6 that changed his skin forever! He was able to finally stop all steroid creams. He is also on probiotics (dairy free), flax and evening primrose oil (he is allergic to fish and shellfish), a multivitamin, calcium supplements, and vitamin D. He eats mainly unprocessed foods, lots of olive oil, fresh veggies and fruit. He has multiple food allergies that are limiting but allow for healthier eating. (dairy, eggs, fish, shellfish, beef, sesame, peanut/tree nuts, raspberries and mustard) My heart goes out to all those who suffer with or are caring for someone who is suffering with eczema. I have cried my eyes out many a nights, lived through sleep deprivation and have felt like the worst mother in the world…hang in there, stay positive, keep trying…the right solution is just waiting there for you…it is that ‘hope’ that got me through my worst days. Susan H @ The Food Allergy Chronicles

    Like

    May 10, 2012
    • Hi Susan –

      I didn’t realize your sun underwent light therapy. I’d love to hear more about that – do you want to write a guest post about it for others to learn from? Really interesting that it was the changing event in your son’s longterm battle with eczema.

      Jennifer

      Like

      May 11, 2012
      • Hi Jennifer! That is an idea! I would have to get more facts about the treatment he underwent so as my information is more useful. Something about the combination of the light therapy, puberty and supplements just clicked for him. I am pleased to say, at this time in his life we are not worrying about his skin anymore. What a relief that is…we all have our lives back and things are good! Just the food allergies and asthma to contend with now! lol

        Like

        May 11, 2012
      • Hey – Great! Just shoot me an email with your post when you’re ready. No rush. Can’t wait to read about your experience with UV therapy. Jennifer

        Like

        May 11, 2012
      • Hi Jennifer
        I have already wrote to you, but I have been really blessed by finding this web site, Everything I have read here has happend to my daughter Irene. when did here ezcema show up, when she was a baby, the doctor have me a cream I used it for a couple of days and forgot about it, and then it flared up at the age of 3 after she pulled through a very long illness caused by a bacteria that destroyed her stomach linning and took a long time to find out what was the problem, in that period from 1 year to 3 years she only ate four foods and a supplement, chicken, carrots, rice, yuca. In that time she did not have anything on her skin, so when she turned 3 her skin acted up, and we where told she had atophic dermatitis, and since I had it when I was a child no problem.We only used creams for her dry skin and it got so bad, that she would always be cold, turned purple red, her skin would crack with no reason, everyone would tell me that I wasn´t taking care of her, she would wear long sleeve shirts, and was moddie, tired, scratching so bad, she would not go in the water, the sun drove her crazy with pain, and so we took her, at the age of 5 her to Boston´s Children Hospital, and with Tar shampoo, hydro petrolatum for her skin, and two cortisone ointments, she had a new skin, it did last not last long, I only decided to use the low potent ointment because I was scared to use them, and was always after her, putting ointments and I was told that after she passed through adolescence, which was like hell broke loose and I am not exagerating, it will in 98 percent of the cases go away. It did not. So she is that small 1 or 2 percent that it becomes cronical. Now I know that it could be the cortisone she used for so long, maybe some foods, and the climate, ect. She has used the light therapy. It helps alot, for big crisis, she had 6 weeks, three times a week, for 30 seconds to 1 mi. 30 sec. exposure, because of her weight and size. It can be used every 4 months in one year. It stop the dry skin, and itch, it is safe, and made her feel good after the first week….What has helped her alot it is to rap with soft bandages dipped in alot of hydrating oitments, not creams because I have not found one that did not sting her, so maybe it can help. The other theraphies have helped but not one has lasted more than 6 months, and nothing has stopped the itch……that is one of the major ploblems. So with this ideas I hope they help, but in my country I can not find a relayable chineess medicine practicinal, It does scare me. Homeopathic helped with her nerves, in relaxing her, and in a place where she was the only one with this condition, her selfsteam has always been low, and insecured, and boy it is hard. She only knows how to be ill not healthy, and phycologists sometime do not know how to really help.
        Thank you for your web site and all this comments, too bad I did not access to them or anything during her growing years, it could have made a diffence.
        Carmen Carrión
        sting her, the areas that are badly dry or damaged.
        sss buclimate….but

        Like

        July 5, 2012
      • Hi Carmen –

        I’m so happy that you reached out. All we can do is to help support one another – offer words for consolation, words of support, and suggest things to try. I am actually reading a book right now – it’s amazing and it’s focus is Integrated Medicine, or medical and natural therapies combined. The book is “Healing the New Childhood Epidemics.” What strikes me about what you said above is that your daugther first developed eczema around age three after she had a bacterial infection. I’m guessing they gave her antibiotics? This book addresses how antibitoics, as well as many other things, can trigger illnesses in the body by creating a yeast over growth. There are many other things usually going on in the body, besides the over growth, so it was really interesting reading what this physician recommended.

        I highly recommend you take a look at that book. I’m reading it now and it all just makes so much sense. He doesn’t reference eczema very much, it’s more on asthma and allergies (as well as autism and ADHD), but he mentions that most kids with one of these conditions have eczema, so they’re all triggered by similar things.

        Good luck! If you read the book, let me know if it changes your life. We’re currently looking for an integrated physician to help Tristan.

        Jennifer

        Like

        July 5, 2012
    • Sarah #

      Susan-

      I am so sorry to hear about your son, but so relieved to hear he’s doing better. We have very similar stories except my son is only 2. It’s devastating to watch him suffer the way he does. I’m going to look into more of what you recommended. Thank you,
      Sarah

      Like

      July 17, 2013
  12. Helen #

    Hi Jennifer,
    I found your blog through ITSAN, and felt that I had to share some of my own experiences. I am a woman in my mid forties, and have been using steroid creams to treat severe eczema since my teens. Several times I have been hospitalised for over 85% coverage of eczema, and I was resigned to the fact that this was a life-long condition, and that strong steroids were the only treatment.
    Nine months ago my doctor told me to stop using hydrocortisone cream on my face, as the skin was showing signs of steroid atrophy – it was papery, thin and flaky. I did some research and found Kelly Palace’s website and Dr. Rapaport’s research, showing that steroids could cause eczema to worsen. The more I read, the more familiar that scenario was – my skin was addicteed. Over the years I had tried many different alternatives to steroids, and each time I’d get a flare up of my eczema. I naturally assumed that the flare was a reaction to whatever new treatment I was trying at the time, BUT with hindsight, I now know that it was the start of steroid withdrawal that caused the flaring. I gave up using steroids completely on 13th August 2011.
    I had read that withdrawal was difficult and I thought I was prepared for it. I wasn’t remotely prepared. Cortisone is produced naturally in your body by the adrenal glands, so when the body absorbs it from steroids, the adrenals stop producing it. It takes a while before they adjust and start producing cortisone naturally again, and during tis time, adrenal fatigue or even adrenal crisis can occur. That’s what happened to me – I was severely fatigued to the point where I didn’t have the energy to get out of the bath once I’d got in, and had to sit on the side of the bath until I recovered enough energy to continue. I was bed bound for four months. In addition to the fatigue, my skin flare was severe – I had head to to redness, and my legs and face became swollen and vesiculated. They would weep and ooze daily, My hair started to fall out because of the severe shock to my system. I could not regulate my own temperature, and it would fluctuate wildly from hot flushes and sweating to shivering and needing to be wrapped in a blanket. At one point I thought I might die, I felt so very ill.
    I got through it though, and at this point in my withdrawal I have normal energy levels, am no longer bed bound and the vesiculation on my face has healed. My legs have also mostly healed and are no longer swollen. My skin is not as red as it was, though it still drives me crazy with the itching, I feel that it is improving, and I am looking forward to the day when the itching goes away – it will happen. In addition I have lost over three stone in weight due to the changes I made to my diet. During the withdrawal I found that I cannot tolerate foods that are high in sugar – they make me itch like crazy. I also can’t tolerate high caffeine or alcohol, so I cut out all of these things.
    I do not mean to put anyone off by posting this. My intention is to make people aware of how very hard the process of withdrawal is. It really can’t be sugar coated in any way – if you have used steroids for a long time, as I did, coming off them is going to make you very ill. BUT..the health implications of a steroid-free life far outweigh the difficulties of withdrawal. I feel more positive about life and my ability to manage my skin than I have for years. I am very glad I made the decision to give up using topical steroids, even though the road to recovery was long, debilitating and very difficult. I feel I have made the best possible decision for my health, and I would strongly encourage others to do the same.

    Like

    May 10, 2012
    • Helen – Wow, you’ve really been through it – I’m sorry to hear how horrible the withdrawl process was for you. It’s wonderful you found what was worsening your eczema. While medication of any type can be helpful in the short term, I am leery of anything used in the long term. Physicians clearly tell us there are side effects of using steroids long term, but yet, many of them prescribe them for years and years. I cannot personally relate to the overuse of steroids, but I can see how this is possible and how the body could certainly react in such a negative way. I do hope your story helps others see that over use of any medication can really harm the body. With eczema, usually there is something going on with the body that needs to be identified – allergies usually. Steroids can help in the short term, but it is just a band-aid for a what’s usually a much larger problem. Thanks for your story Helen. – Jennifer

      Like

      May 11, 2012
  13. Jennifer,
    Great post Jennifer – becoming quite a polarized topic – seems these days, that you are either lumped in the pro- steroid group or anti-steroid group, but I think there is a middle ground. I think there is definitely a time and place for steroid use, though I am not necessarily for steroid use when it comes to eczema because of my personal experience with my daughter. It is becoming more well known that some individuals do not do well on topical steroid creams – in fact it does them more harm, than good -this was the case in my daughter’s treatment of eczema. I used steroids on my daughter who was 2 1/2 at the time for a year – her eczema went from mild to ‘moderate’ – then before we knew it, it was considered a ‘severe’ case of eczema. Over time we had to use more and more steroid creams, stronger and stronger to get relief from the itching and red rashes – we felt like we were chasing the rashes all over my daughter’s body over a year’s time – what started on initially just on her upper thighs and lower stomach eventually covered almost her entire body within weeks. A year later after doing everything imaginable from changing lotions, bedsheets, ripping out carpet, allergy tests, elimination diets, NAET, accupuncture, NAET, sublingual drops, moving locations, I ran across a story about ‘red skin syndrome’ – topical steroid addiction. itsan.org. Turned out my daughter was suffering from the steroid creams we were applying on a daily basis. We were just doing what we were told by doctors and they reassured me that my daughter’s skin could not become addicted to steroid creams despite what I read. They were wrong. After more thorough research on the topic and against our doctors recommendations, we decided to take our daughter off of all steroid creams. We had nothing to lose at this point. 6 months after taking her off of steroids, her skin was 95% healed and by 8 months, 100% healed. It was a rough ride road to say the least, but we finally found out what was making our daughter’s eczema so bad and healed our daughter’s supposed severe case of eczema. It wasn’t environmental allergens or food that were the biggest culprits.triggers – it was the steroid creams we were using to try and manage the disease. For more info: itsan.org Also, a blog I created to share my daughter’s story: http://scratchymonster.blogspot.com/
    Kristina, mom of a now 4 year old steroid and eczema free daughter. 🙂

    Like

    May 9, 2012
    • Hi Kristina – I think there is definitely a middle ground too, which is what I hope expressed clearly in my post. While steroids didn’t work for us, they can definitely help with flare ups when used for a short period of time. We tried pretty much everything you mention with our child too, Kristina. Those were stressful times! Trying to find any sort of relief for our son and for our family, so difficult. I’m grateful that we were both able to help our children relieve their little bodies of eczema one way or another. I hope we get to 100% free too! Thanks for sharing your story! Jennifer

      Like

      May 11, 2012
  14. Elaine Richardson #

    hi jennifer,my daughter was prescribed mild steroid cream for baby eczema as a very young baby,her eczema continued to worsen as she got older, tests showed allergies to wheat and dairy which we eliminated for nearly a yr which made no difference at all to her skin…the last few yrs have been terrible for her,her skin continued to worsen and the strenghth of the steroids increased,she’s had numerous infections and about 2 yrs ago became really unwell and lethargic…numerous tests,including removing a lymph node from her groin showed up nothing…i was told i should expect her to be unwell because of her severe eczema…she;s had severe eczema most of her life but had never been unwell with it before for so long..to be honest i was made to feel like a neurotic parent who was looking for something to be wrong with my child…after several courses of oral steroids,which worked wonders at first but as soon as we tapered down her skin would flare worse than before…she was put on an imune suppressant which did nothing to help at all so we stopped that after about 5 months…she continued to be unwell and was cold and shivvery all the time..for months we tried to step down with the steroid creams but hd to step back up within a day as her skin deyeriorated each time we tried…eventually even on potent creams her skin was worsening,the poor girl had no quality of life at all…about 4 months ago i noticed by chance on an eczema forum 2 posts from mums who said their childrens eczema only improved after stopping steroids..it was like a lightbulb moment for me…the realisation that it was the steroids that were making my girls skin worse…15 weeks ago i stopped using all steroids on her…the withdrawal has been awful for her but she;s now coming out the other end of it and getting her life back…we’ve had amazing support from others going through the same thing and through itsan.org..i wish i’d known more yrs ago about the damage overuse of topical steroids can do to a persons body…the skin damage is’nt the only devastating side effect of these powerful drugs…doctors should monitor the usage more closely and offer alternative treatment before resorting to the quick fix in a tube….

    Like

    May 9, 2012
    • Elaine – I can only imagine how difficult it must have been for you. My son’s case was severe, but not as severe as what you’re describing. I was at my wits end with my child, so kudos to you for staying strong for your daughter and helping her find a way to recovery. I sure hope others can find strength and motivation in your story. Thank you for sharing! Jennifer

      Like

      May 9, 2012
  15. Caley #

    We went down the path of naturopaths etc first up for my sons eczema. No luck there at all. So went with steroid creams and started on a reasonably strong one and over the last year and a half has been weaned down to a very mild strength one. Were lucky if we have to use it just on his hands once a fortnight so keep on top. This being a child who was covered and weeping from head to toe at age 4 months and hospitalized for 3 days to get it somewhat under control. His is food related with the biggest trigger being milk proteins.

    Like

    May 9, 2012
    • Hi Caley – Great that steroids helped your child so much and without any side effects. Finding the triggers is the hardest part of eczema I feel, so its wonderful that you’ve been able to identify your son’s. It’s great to hear from you! Jennifer

      Like

      May 9, 2012
  16. Kim #

    I have been using Fluocinonide Cream which is a topical adrenocortical steroid for the past several years, but usually not for longer than a day or two at a time. “It works by reducing skin inflammation (redness, swelling, itching, and irritation) by a way that is not clearly understood”, according to a website I just read…..that’s kind of scary, isn’t it??? I TRY to avoid using any prescription creams or ointments if at all possible as I know they do thin the skin and have other side effects, but sometimes they are necessary in order to control a major flare up. I haven’t noticed any real issues YET, like my skin being invisible where I apply the steroid creams or anything but you never know…

    I haven’t tried any homeopathy but I do take a probiotic and use Omega Fish Oil but not sure they help a ton. Foods among other allergies are huge triggers for me and I am not as GOOD as I should be so it’s always hard to say what really helps and what does not. Jennifer you are so good at being cautious and consistent with your son. That motivates me to be better, thanks!

    Like

    May 9, 2012
    • Hi Kim – That’s good that you’re not having to take the steroid daily. It sounds like the so called “steroid allergies” are from daily really high doses. I think a lot of people are like you in that they can use small amounts here and there to treat a flare up. It just didn’t work for Tristan. I think it’s harder to eliminate food allergies for ourselves – I’m WAY more diligent with my son than I am with myself. As mothers we always put our children first, which isn’t always a good thing when stress is concerned (smile), but that’s the way we’re hard wired I suppose. I know I have some food issues, but cutting them out is difficult – I’m with you there.

      Jennifer

      Like

      May 9, 2012
      • Thanks for this post Jennifer! I’m in a similar boat as Kim and end up having to go for steroid ointments when going through a severe flare up. The long-term side effects freak me out as well, and so I’ve only taken steroids orally once (my whole face was flared up, I looked like a swollen tomato that had severe sunburn) and usually rely on steroid cream to get me through the worst of times. Thanks for sharing your story!

        Like

        May 11, 2012
      • Hey there – Yes, steroids can really help in the short term. That’s great that you have no trouble stopping them when your flare ups clear. It’s nice to have something you can rely on when things get bad. Thanks for your comment! Jennifer

        Like

        May 11, 2012
  17. Angela #

    My aunt practices homeopathy, and we’ve used it successfully for many things. Did you have some prescribe it for him, or just try something? We just went to the dermatologist yesterday. Sent us home with cerave and hydrocortisone mixed in for flares, and cerave for when he’s not. We’ve been using vanicream with some success. I just saw pictures of a poor little boy who’s going through steroid withdrawal. Even the dr. said the steroids are not good, thins the skin. Would you share what remedy/drops you’re using? What supplements? I know everyone is different, but it helps to start somewhere! Thanks for your blog.

    Like

    May 9, 2012
    • Hi Angela – I was really not sure about homeopathy at first. I’ve heard so many mixed things. We actually started with a homeopathic practitioner, saw her for 6 months and had zero change to Tristan’s skin. BUT, we made no dietary or other changes. It was simple homeopathic granules. Then we took a break to try some other natural treatment options and started really working on his dietary changes and more natural household products. At this time we also started homeopathy drops as suggested by a naturopath – he’s taking Dr. Reckweg 23 and Homeodel 43. You can buy these over the counter, but definitely speak with a practitioner first. They seemed to help within a few days. We have stopped using the homeopathy on a few occasions and within a matter of days his skin started flaring up more. So, we’re sure they’re working.

      Other supplements: This immune balancer has been great – https://itchylittleworld.wordpress.com/2012/03/16/our-eczema-trials-immune-balancer/ We just started a fish oil and a probiotic with Lactobacillus rhamnosus. This specific strain is the only probiotic strain proven to help reduce eczema symptoms in small children. It’s hard to find and may have to custom order. http://www.odt.co.nz/campus/university-otago/203608/eczema-data-exciting

      CeraVe is pretty good for a drug store cream. We use this often on Tristan. As much as we try to stay with the natural creams, many times he develops small allergic reactions to a cream he’d been using for days. We stop it for a few days and he’s fine to use it again. So, we supplement with CeraVe and Vanicream. I try to use Vanicream over CeraVe as it is less “toxic.”

      Steroid withdrawl is a scary thing. I’ve seen photos too. I’ve heard it’s awful!

      Hope all this helps!
      Jennifer

      Like

      May 9, 2012
      • Simone #

        Hi Jennifer, I just came accross this very helpful information and I’m interested in trying some of your suggestions. I looked around the web for information on probiotic and I’m very confused by the information regarding the different strains. It looks as though it’s easy to find Lactobacillus rhamnosus GG – but it this the correct strain? The article mentions Lactobacillus rhamnosus HN001. Is this different? Thanks in advance, Simone

        Like

        June 27, 2012
      • Hi Simone –
        I’m so happy you’ve found some new things to try – that’s all I was hoping for when I set this up – to provide more options to parents and to help us all feel less alone. Regarding the probiotic, it’s best you speak with a professional – either at your health food store or a natural practitioner. I can tell you what our naturopath recommended was this: Acidophilus Plus (milk-free) by Trophic – it contains: Lactobacillus rhamnosus (R0011), Lactobacillus casei (R0215), Bifidobacterium longum (R0175), and Lactobacillus acidophilus (R0052). He’s been on it for two months, so we’re unsure if it’s workign yet, need to give it some more time.
        I’ve just started a forum for eczema, not sure if you’ve seen it. It’s a great place to post questions and review other’s comments and suggestions. Take a look: Itchy Skin Support Forum http://w11.zetaboards.com/Itchy_Skin_Support/index/

        Good luck and let us know how it goes with the probiotics and anything else new you try!
        Jennifer

        Like

        June 27, 2012
  18. I used steroids for my eczema since I was a kid. Over time I got used to the creams and needed stonger and stronger creams to get any effect. I ended up (ab)using some cream that my husband had been prescribed which was a very strong steroid and foolishly slapped it all over my face because it made my skin “look good”. Unfortunately, the effect didn’t last and my skin started to turn red (steroid rosacea) and burn. I read an article on Wikipedia about steroid rosacea and it said the only way to cure it was stopping steroids. It has been a rough ride so far, but i have been off steroids for 5 months now and things are improving. Luckily there is a support website out there for people addicted to steroid creams. It is called itsan.org

    Like

    May 9, 2012
    • Hi Louise –

      I’ve heard withdrawing from steroids is worse than “rough.” Good for you for staying strong and fighting through it. It’s so easy to get caught up in the quick skin fix, but if the eczema starts to snowball from increasing doses of steroids, then it’s just not worth it. I’ve seen the website, it’s really unbelievable how long some people have been on steroids and what it’s done to their bodies. What other changes to your lifestyle have you made? That have helped your eczema?

      Jennifer

      Like

      May 9, 2012
  19. Lee-Ann O'Connor #

    Oh gosh, that has given me food for thought! My daughter was 3.5 months when she had her flare up of eczema head to foot, we went to a private dr in the UK who prescribed steroid treatment. Eumovate and Betnovate and Hyrdocortisone. It took a while for me to realise whilst weaning her that she had food triggers and we eliminated lot’s of foods. 4 yrs on and she still suffers, we had it under control for 9 months without the use of steroids. Unfortunately, she became allergic to pollen and that has set us back so much with constant flare ups – April being the worst month as it effects breathing as well. The dr’s just change the steroids from Elocon to Protopics..nothing is working now..i think our next step is a Homeopath..thanks for sharing this blog, it’s good to hear that other parents also struggle with dr’s and their potions..we must find natural ways to help children!

    Like

    May 9, 2012
    • I totally hear you on the spring allergies. Tristan is the same way. His skin was looking really great, but each April he flares up on his face and neck. I read something about the pollen from male trees being guilty for all the allergies. Apparently most cities plant only male trees so there is no fruit produced, which could lead to messy cleanups. If there was more of a balance of female and male trees allergies would be better this time of year. Isn’t that interesting? Maybe now that this research has made it’s way into the public, things will start to change.

      Since it’s a seasonal allergy issue, have you tried treating the allergy instead of the eczema? If it’s much worse for our son next year, we’ll start him on some allergy medication or maybe try some acupuncture.

      Good luck! Let me know how it goes! Stay strong, allergy season should be coming to an end shortly.

      Jennifer

      Like

      May 9, 2012
  20. the speech monster #

    oh thank you SO much for posting this. so you mentioned years later, you figured food allergies played a big part in his triggers – was this medically diagnosed? Or from your trial and errors? if medically diagnosed, did the allergist have anything to add about the earlier statement from your ped derm about its unlikely relation to food allergies?

    we’re still in the midst of figuring out this whole eczema thing. it’s been 2 months and although benji’s weeping has stopped and the eczema is under control, i’m still not happy with the current daily use of hydrocortisones. we use hc butyrate 0.1% which is a medium strength one. DAILY. and yes, it works. BUT there are still new outbreaks everyday on different parts of his body. some days more than others. i have also tried to revert to using the mild strength of hc 2.5% and it does not seem to be effective anymore. the vaseline we’re slapping on religiously three times a day is not really preventing new outbreaks but the pediatrician we saw yesterday told us to simply continue with it. does she not understand that vaseline is not really working well enough at this point? i suggested to her if we should try other moisturizers that other moms have used with success, only to get shot down.

    the naturopathic route we wanted to originally take was also put to a halt when i found out the probiotics i was prescribed contained MILK which i highly suspected was causing benji’s flare ups (i’ve been dairy free for 2 months now). i didn’t trust the naturopath i saw and never found a new one. my husband is also more inclined toward western medical science of creams (he comes from a family of physicians tho he isn’t one) so it’s really up to me to convince him to try this route which i did initially but after seeing little results, decided to let that matter rest for awhile.

    i’m still assessing whether my elimination diet has worked since a lot of friends have been asking me for my experience, too. will do a write up soon and compare notes with you.

    Like

    May 9, 2012
    • Hi! Always good to hear from you 🙂 We had Tristan tested for allergies multiple times. When he was one years old he had skin and blood tests done. Skin test showed only a walnut allergy. Blood showed nothing. At three years old we retested him, knowing what he reacts to, which I’ll list below. Skin test showed hazelnuts only. Blood showed nothing.

      Between the testing above we determined through an elimination diet that the following foods aggravated his eczema – gluten, soy, dairy, corn, walnuts, hazelnuts, pecans, tomatoes, cantaloupe, and strawberries. He seems to be getting less sensitive to tomatoes and strawberries – will check out cantaloupe soon. The first four foods remain very big triggers for him – he immediately gets a combo of itching, hives, and/or wheezing. True allergies that did not appear in tests. Nothing was ever medically diagnosed – the two doctors I was working with at the time didn’t believe it was food related by looking at his skin and seeing allergy test results. They didn’t believe in food challenges or elimination diets. I should have kept looking around for another physician, but I was desperate and didn’t have the time. An unsupervised elimination diet is NOT recommended. There are great allergists out there that will work with you to do an elimination diet and food challenge, but finding one could be hard as it takes a lot of time they don’t have.

      The new outbreaks on his skin sound like either he being exposed to a food our external allergy or he’s reacting to the steroid. Have you found any of his triggers yet? Seasonal allergies, indoor allergies, foods, detergents, stress, heat, cold, etc?

      As to the cream, nothing will cure his skin, but many will give him some extra moisture – you don’t want the eczema drying out too much or it can get itchier or crack and bleed. You’ll have to find something that works for you. How does he react to creams? My son says all the drug store creams burn and sting his skin – we figure this is from the alcohol. But, many of the natural creams, which I prefer and sell on my site, are fine for a few days and then he gets itchy. So, I’ve started a cream rotation program. This is what we’re using on a rotating basis and it’s working VERY well for us at the moment – could change tomorrow – gotta love eczema 😉 CeraVe or Vanicream/Canaderm, Eczema Ease Balm, Souris Verte’s Shea Butter Cream, Unrefined shea butter, and Sweet Knee’s Bun Glaze. We’re running a 20% off system wide special for mother’s day if you want to try any of these. Use coupon code MD2012, valid through Sunday.

      Yes, many probiotics contain milk, soy, or gluten – so be careful. Tristan was on a probiotic that was milk based before and he reacted big time – this was a couple of years ago. We started another strain, which has been proven to help eczema in small children, and it could contain traces of milk, but so far he’s ok. This is the strain – Lactobacillus rhamnosus – very hard to find. Don’t give up on supplements like fish oil with low mercury, probiotics, homeopathy – you may find a combination that works for you. What we did is the elimination diet and started a bunch of natural supplements – probiotic, homeopathy, fish oil – all at the same time and his skin started improving within days. Of course, this could take you the other way too – you may find it makes him worse, in that case it would probably be the probiotics if you were using one that could contain milk. When we started all of this I was at a cross roads – if we didn’t find something to help Tristan soon, I’m sure I would have literally lost it. At that point I was crying daily over his skin. That was barely a year ago. Crazy!

      You’ll get there! Just stay strong for you son. Find some good supportive physicians and a natural practitioner you trust and it won’t be long. Where do you live? I can ask around for a naturopath or homeopath.

      Jennifer

      Like

      May 9, 2012
      • the speech monster #

        hi jennifer
        wow thanks so much for this detailed reply. i had come across the article about the strain of probiotic that was found to help kids prevent/keep eczema under control and no, that was not the strain we got prescribed. i am waiting till we head back home to australia where we permanently reside to start the ball rolling again. if you know of any naturopaths out that way please let me know. currently we’re in vancouver but will be here for only another 3 weeks (which is going by too quickly).

        there are a couple things i saw on your store that i’m interested in trying. someone also recently gave me some pure jojoba oil that i found really effective for my facial skin and did a little test on a patch on benji’s leg so we’ll see how that goes. also, i read something that sunflower oil seems to help as well so am toying between that and trying out other natural creams you have. currently we are using just vaseline, slapping it on him about 3 times a day. i did my own total elimination diet (which was right around the time i stumbled on your website and found inspiration 🙂 ) and i think because i didn’t have the help of a dietician or a good naturopath it was quite difficult to maintain my nutrition levels. i went for almost 2 weeks anyway, and after introducing a range of different foods, i am quite certain that dairy and wheat are triggers. in fact, i realized that i might have little eczema patches on myself, too! still tring to figure that one out but they’re so mild and barely noticeable. i am definitely going to get him tested for allergies when he is able to – at one? or two? – if his eczema persists till then.

        we have stopped using the hydrocortisones daily except on patches that surface that require them. i am also now using reduced strength hc (mostly just using 2.5% vs hc butyrate 0.1%). but yeah there are still flare ups here and there. i know there are times when i sneak in a thing or two of food products that contain wheat or traces of wheat. 😦 and a couple days ago i accidentally got food that came drizzled with greek yogurt…and still ate it anyway (as opposed to throwing the whole thing out which i guess i should’ve???) which benji is paying for when a little red spot appeared on his skin today.

        it is interesting that the allergy tests tristan did did not show up with reactions to foods you know he is allergic to. i read somewhere that these allergy tests are not totally reliable and the ‘gold standard’ is to go through with the elimination diet. but of course, it is extremely laborious and if not done properly can cause malnutrition and false positive results, too.

        for us, the worst part was over after his weeping stopped. the pediatrician who saw him on two occasions diagnosed his condition as “mild” but i don’t trust her (for a variety of different reasons) and think his is actually more moderate. whatever it is, it seems to be under control now for the most part but yeah, i would just love for his skin to be *completely* under control and be hc free for an extended period of time. it might be all too early right now since he’s still so tiny and we really don’t know what course his eczema is going to take.

        although i am loving vancouver a lot, with benji’s condition, i am actually looking forward to returning to melbourne where we have proper health insurance and a good family doctor i trust who i’m pretty sure will refer us to a reliable allergist/dermatologist. we also have a wider network of friends there who could also lead us to a good naturopath/homeopath. fingers crossed. it’s always good to hear stories of people coming out the other end. thanks again. 🙂

        Like

        May 12, 2012
      • Hi! I didn’t realize you were from Australia originally. Then, yes, once you get back it sounds like it may be a good time to start really working on trying to determine Benji’s triggers. If he’s still breast feeding it makes it much harder I think. Once he’s stopped you should more clearly be able to determine if anything is food related. Make sure to find a great pediatric allergist who is willing to spend the time with you to conduct the proper testing – elimination diet followed by the food challenge. It’s so sad that this classic testing has been phased out as physicians just don’t have the time it takes to dedicate to this most reliable type of testing. I wish I knew someone to refer you to, but I don’t. If I were you I’d start posting on all the allergy and eczema FB page asking for a referral and be specific about what you’re looking for. You may be surprised that you’ll find someone this way. Good luck with everything and the move!
        Jennifer

        Like

        May 14, 2012
  21. Jen #

    I am not a child but an adult going through hell because of topical steroids. My history of use is on and off for the past 20 years for what started as a little eczema on my eyelids. Last fall I was at my breaking point. On the strongest topicals and orals and it had spread all over my body. I believe now that I was addicted to the steroids and now I am going through the withdrawal process. If anyone would like more information please go to http://www.itsan.org

    Like

    May 9, 2012
    • Hi Jen – I’ve heard of this website. I cannot imagine what the withdrawl is like. Stay strong and hopefully it will pass and you’ll be good as new. Good luck and keep us posted on your progress!

      JEnnifer

      Like

      May 9, 2012

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