Watching our daughters eczema get progressively worse was awful. In September 2014 she was hospitalised due to infected eczema. She was very ill. She was lethargic and in a lot of pain. The silver lining is that we learned a lot from our experience about managing eczema and now have a much healthier daughter as a result. In this blog I would like to share what we learned in the hope that others may benefit. I have no medical training so this information is provided in good faith and anything you do should be checked with a qualified dermatologist. I have included links to my other blogs for people who want to understand eczema in more detail.
Listen to your dermatologist
Try to get referred to a dermatologist as soon as possible. They are the specialists. Get as much information from them as possible and follow their instructions to the letter. e.g. how much cream to apply, how frequently and for how long.
Don’t fear steriod creams
Our derma nurse said most problems are from under use of steriods not over use. No-one likes giving their children steriods but they are effective in most cases. The internet is full of scare stories about steriods but the risks can be minimised if you follow the guidance of your dermatologist. They will show you how to safely withdraw from steriod creams to avoid what they call ‘bounce back’ or ‘rebound’
Motivated by the anti steroid lobby ITSAN many people mistake staph ridden eczema for steroid addiction and stop using steroids. This can put the child through hell. Steroid addiction does exist but most of the clinical studies on the ITSAN website are about older people who have abused steroids or used them for a long time. For a better understanding of TSA and TSW see my blog on this subject.
Complete the course of steriod cream
A course of steriod cream should be treated like a course of antibiotics. You must complete it or the inflammation will return very quickly. It is tempting to stop using it when the skin looks clear.However there is still inflammation under the skin that you can’t see. If your dermatologist says use the cream for 4 weeks, do exactly that.
Understand Staph
The difference between mild eczema and severe eczema is often due to the bacteria Staphlococcus Aureous which becomes the dominant bacteria on eczema skin. If you can control the staph the eczema will be much milder. Steroids, bleach baths and probiotic creams can all reduce Staph. For more detailed information on Staph, see my blog ‘Staph Wars’
Bounce back or rebound
If your childs eczema has been very severe or got out of control you may be told to use moderate or strong steroids for a prolonged period. (Months sometimes). You will be told to slowly reduce the frequency of applications. During this step down period you may see severe eczema flares. This is called rebound or bounce back. (Don’t confuse this with topical steroid withdrawal or addiction which is something completely different). The bacteria Staphlocccus Aureous plays a big part in rebound. If you can control Staph you can minimise the rebound. A lot of people find that bleach baths are effective. (Google the protocol for bleach baths). We did not use bleach baths. Instead we used a probiotic cream. These are very new and hard to find but we had great success with La Roche Posay Lipikar Baume AP+. We used the steroids all over for 4 months and when we reached one application every 3 days we introduced the Lipikar cream. Within 10 days we were able to stop using the steroids. It was important to use the steroids first to build up the layers of skin which had been eroded by severe scratching and flaking. For more info on probiotic creams see my blog ‘Millies Probiotic Cream Trial‘.
Inflammation breeds dry skin and more eczema
Our daughters skin was drying out every two hours. We thought this was a genetic problem. (i.e. people with eczema do not produce enough natural moisture). We later found out from the dermatologist that the dryness is a side effect of the inflammation. This is why it is so important to use the steriod creams (as directed) to reduce the inflammation. Staph bacteria loves inflammed skin and produces a toxin that causes more eczema.
Moisturise regularly and don’t forget night time.
You may be told to moisturise 4 times a day but there are 24 hours in a day. If your child goes to bed at 8 pm and wakes at 8 am that is a 12 hours without moisture. This may be why a lot of scratching goes on at night. Even if the skin doesn’t look dry it may be dry enough to let irritants in and start the itching.Consider moisturising just before you go to bed even if this means waking the child up. (If their skin is comfortable they will soon go back to sleep). Then moisturise again first thing in the morning.
Increase moisturisng frequency after a flare up.
Steroid cream may help you get a localised flare up under control to the point that the skin looks clear. However as there is often still inflammation under the skin it will dry out quicker than the skin that has not been affected. Therefore increase the frequency of moisturising for a while after the flare up has ended.
Beware forum advice
Most people on forums mean well and it is good to talk with others who have similar experiences. However if forum advice contradicts your dermatologists advice be very wary. Dermatologists are highly trained, experienced and most go to conferences to keep up with the latest research. Also every case of eczema is different. What works for one may not work for another. There may also be a small number of people on forums using them to promote their own commercial interests.
Beware miracle cures
Eczema is a condition that is managed not cured. There is no cure, although your child may grow out of it and it may improve if triggers are eliminated. Our derma nurse told us that there was a problem in the Bangledeshi community where parents were seeing great results from a herbal cream. It turned out that this ‘herbal’ cream contained dangerously high levels of steriod.
Be patient
Any treatment takes time to work. Don’t give up on a treatment after a couple of days.
Treat allergy tests with caution
From what I have read the medical community are not clear whether allergies cause eczema or eczema cause allergies. What I do know is that it is easy to get excited when a blood test finds that your child has an allergy. However a positive test does not necessarily mean that eliminating that trigger will get rid of the eczema.It may have no effect or it may be one of many allergies that your child has.
Beware also commercial companies offering allergy tests. I have read several reports saying that the Igg tests that many of them use are not a good indicator of allergic response. Our derma nurse said that it looks like they provide the same long list of allergies to everyone. The best test is Ige (also called RAST test) which are used by the NHS in the UK. Even this test can show false positives.
If food allergies are found ask to be referred to a nutritionist who will advise how your child can eliminate the food without missing out on vital nutrients
To better understand the relationship between allergies and eczema, see my blog ‘What causes eczema and allergies’
Triggers
If you are looking for triggers it is easier if the skin is healthy first. So get any infections cleared up with topical antibiotics, reduce inflammation with steriod creams and moisturise frequently. Immunoglobulin (Ige) allergic responses appear in minutes of eating a food so are easy to spot.Unfortunately T cell allergic responses take a lot longer to show so are harder to spot.
Watch out for red herrings though.Severe eczema leaves the skin in poor condition and irritants can easily penetrate the moisture barrier causing a flare up. Air conditioning or just not having moisturised for a while can cause a flare up that can be mistaken for a food allergy response.
Pets are a common trigger and one that people are reluctant to remove. To find out if your pet is a trigger you need to remove the pet completely from the house for several months and clean the house thoroughly. Also stay away from any other household that has pets. This is a very difficult decision but could make a significant difference to your childs eczema.
Read your food labels
If you confirm that your child has a food allergy, read the label of every food that you buy. You may be surprised to hear that bread and sausages can contain milk and that ice cream may contain egg.
Bathe regularly
We were told to bathe regularly when Millies eczema was bad but once the infection cleared we found every second day is enough. Also ask your dermatologist about bleach baths. The UK NHS are now finally recognising the value of these.
Seek medical help if the eczema is wet
Although wet eczema does not necessarily mean it is infected it is very likely to become infected once wet. Have a doctor or dermatologist look at is as soon as possible. Infections can become quite nasty. Our daughter had to spend a week in hospital recovering from infected eczema.
Beware secondary skin infections
Eczema skin is prone to other infections like impetigo and eczema herpeticum (from the cold sore virus). Google the symptoms and seek medical opinion if in doubt
Catch the itch before the scratch
Having got the skin clear again it is easy to spot a rash appearing. As soon as Millie starts scratching we check her skin and if we see a red patch we put emolient on it. This seems to stop her scratching before she does any damage. The red patch usually fades within a couple of hour or is gone by the next day.
If you beat the staph you can significantly improve your childs quality of life. Millie still has eczema which appears in small patches every few days. But whereas it used to spread like wildfire now it disappears in a day or so. For stubborn spots we apply a bit of pure Shea butter and for really stubborn spots we apply a small amount of steroid (but that is rare).
Current Status
Although we still have to moisturise 4 times a day and put her scratch mitts on at night, her quality of life is 95% better and her skin looks beautiful most of the time.
Update 23/7/16
This blog was written in October 2014. It is now July 2016 so I thought I would add an update. This is Millie on her 4th Birthday. She is pretty much free of eczema most of the time. We may see an odd small patch about once a month. We do not even have to use moisturiser any more. I hope this gives hope to other parents in the dark times of severe eczema.
Our Eczema Story 
It’s always nice to see someone else with a level-headed and informed understanding of eczema. There are far too many alarmists on the internet, and just as many others providing convoluted information who have no clue about what the disease actually is.
The research does show, however, that approximately 60% of eczema sufferers have IgE -mediated immune involvement in the disease. You are correct about the IgG and IgE tests being less than perfect, and even specific IgE (sIgE) tests are unreliable, although patch and serum tests can be helpful. The most telling IgE assay is for total serum IgE which is a very good indicator of atopy which embodies primarily type 1 allergic response inflammation in eczema, as well as type 4 mast cell mediated inflammation.
Identification of IgE mediated triggers can be difficult as not all triggers act in isolation, and cross-reactions make identification more problematic.
Food allergies that cause eczema can actually take up to three days to manifest, depending on the pathway: IgE is more immediate, often occurring withing a few hours, IgG and IgM are more delayed.
Also, the cause and effect can be elusive. In many cases food allergies cause the eczema, and in many others, the eczema exposes the individual to developing food allergies through skin permeability.
The unfortunate thing is that there are so many vectors involved that even the most informed physicians can have a difficult time defining an effective treatment plan for any individual. And, the patient or parent still has a lot of work to do in managing and investigating the condition even with an effective treatment plan.
In any case, you’ve presented an exceptional guide on how to be a good eczema patient.
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Good post overall. I would disagree on always listening to your dermatologist though. We followed ours to the letter of the law and he caused two years of additional, unnecessary suffering by basically following the path that most dermatologists recommend – a huge dose of steroids every time there was a bad flare, followed by none at all for the next couple months until the next problem. I don’t know what is said at these conferences that these dermatologists attend, but clearly, there’s very little being said about eczema.
The gradual withdrawal from steroids (and minimizing what we were using) is what helped my little girl finally heal and thankfully, my doctor suggested that when he saw the worsening skin condition we were experiencing. I make this point because you should know that just because you had a good dermatologist, not everyone does.
Congratulations on your success. Great results!
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Sorry to hear you had a bad experience with your dermatologist. We have been very lucky with ours, although it is the Derma nurse who has been the most helpful. She is weaning our daughter off the steriods very slowly. We were twice daily for a week, then 3 weeks once daily, now we are every other day for a few weeks and then it become two days on and two days off. If all goes well she will be steriod free by Christmas. Her skin is 95% clear at the moment which is a huge improvement.
I think it is right to question your dermatologist and research at the same time to make sure what they are telling you is in line with best practice. I fired hundreds of questions at mine. I thought he would be sick of them but he said he would prefer parents to ask questions and raise any concerns. But like I said, we have been lucky. I guess there are good and bad in all professions. Im glad that your little girl got better in the end
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Thank you for a great, eyeopening, uplifting and educating experience. I would recommend all parents of children with eczema read your blog. A great help to me!
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Thanks Wendy. Please feel free to repost my blog on social media. I want the world to know that this disease can be beat or at least managed. There are so many suffering out there and feeling completely helpless.
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Your blog is fascinating, the research you have collated here is invaluable to Eczema sufferers worldwide, thank you!
I am in the process of trying La Roche-Posay Lipikar Baume AP+ on your recommendation, hopefully it can improve the severe Eczema I’ve had for the past 2.5 years.
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