At wits end with Eczema!!

[GinaG3]

My daughter is nearly 4. She has always had eczema, gradually worsening as she gets older. It's a family trait, unfortunately. EVERY single person has it to puberty, then as if by magic it disappears. Anyway..

Im at my wits end with constant flare up that just do not go, ever! Doctor has prescribed everything. They want her using steriod, I dont. Out or desperation I did use some for about 3 days, it helped a little but after 12 hours not using right back it came so whats the point. Shes only allowed to use upto 7 days at a time. This is the very last route I want to take! I breastfed for 2 years, exclusively for 6 months. When we weaned I brought in new foods on their own for 2 weeks at a time before being in a new one. This went on and on. Dairy wasn't introduced until 16 months, wheat at 18 or so and nuts at 3.5 years. I was so cautious it was unreal! She showed a few allergies so I stopped and tried 3 more times months apart, after which she showed no more symptoms. Apricot was the main culprit. She doesn't have this in her diet now.

We're in such a bad flare up now (not that the flare ups ever stop!), doctors don't think it's worth allergy testing or referring to dermatology etc and just tell me I'm bad and being unfair to her not using steroid treatments. Totally unfair I think, but that's a different story. It's just something to mask the problem for a few days before going back to square one, then your stuck in a cycle of steroid.

I've started my own allergy seeking measures. I've cut out dairy from her diet over the last few weeks, slowly weaning her off anything containing cows milk and onto soy. We are now fully on soy and she hasn't had any cow milk containing products for 4 days now but the flare up is worsening. I've heard about soy being a common allergen and worsening eczema, yes. The eczema has spread all over her body, shoulders, knicker line, all down legs, inner thighs. It's usually on her bum, inner elbow, backs of legs and calfs, also hands and down sides of torso.

I do everything, 100% cotton clothing, complete chemical elimination in our home including laundry and bath products, I wash needing at 60 weekly to kill off dust mite, her room is a dust free sleep haven thoroughly hoovered too many times a week.

Please people, what would you do? I feel so sorry for her having been through it myself. Constantly scratching herself, bleeding, being red raw and sore. Would you put your child back on dairy and consult doctors and really push for more investigation (I can try, of course), I can't afford anything private so don't even go there. I've looked into a company that provide silk clothing for eczema sufferers, it looks to have amazing results and medically proven, it's actually available on prescription but generally only through a dermatologist, at ?50-70 odd for a set of PJs it is not affordable to me without the prescription. I'm really at my wits end, I just want to help my little girl!

[Ted Max]

I think you know the answer already.

I hate this online diagnosis/advice thing and think you should always consult a doctor first and last, but going only by your post alone I think you have to consider it likely that this eczema does not have an external cause, or be due to an allergy. Your family history is a pretty good clue to that, as are your extensive efforts to isolate an allergen, without results.

If it is hereditary then you are not looking for an allergy or another external reason - you are looking at managing the symptoms.

You have said that the steroids helped a little, which seems to be more than anything else has done. So...

Nobody can tell you what to do, but if it were me (and it has been) I'd go for the steroids to try and control the acute flare-ups, for the full period that the doctor prescribes. Plus find the best regimen you can on an ongoing basis with the help of your doctor - emollients, paraffin etc, whatever is age-appropriate and seems to work at maintaining some level of control. Yes, it will feel cyclical but you are at least providing periods of relief and control, with hopefully longer periods of calm building up in between.

I think, also, that you may be more likely to get a referral to a dermatologist if you have been through the steroid treatments and things are still not working (again I don't know this to be officially the case, but it as been my experience).

[EDdownunder]

My niece had very bad flare ups and whilst she was visiting in the summer I encouraged her to try a natural solution. We bought some SOS cream from Dulwich Therapy rooms and my sister wasn't convinced but after a few days of application, her wounds were healing and now they are completely healed. She was previously using GP prescribed cream which did help but nothing significantly. Would recommend trying this.

[sbarry]

> I've started my own allergy seeking measures. I've

> cut out dairy from her diet over the last few

> weeks, slowly weaning her off anything containing

> cows milk and onto soy. We are now fully on soy

> and she hasn't had any cow milk containing

> products for 4 days now but the flare up is

> worsening. I've heard about soy being a common

> allergen and worsening eczema, yes. The eczema has

> spread all over her body, shoulders, knicker line,

> all down legs, inner thighs. It's usually on her

> bum, inner elbow, backs of legs and calfs, also

> hands and down sides of torso.

The poor little thing.

Our daughter had eczema when she was younger 0-3 years approx but (touch wood) it has all but disappeared.

We finally replaced cow's milk with goat's milk, having tried various remedies and seen skin specialists and so on, and this more than anything else seemed to cure it. Perhaps you could try that for a while instead of Soya if you think Soya is adding the the problem?

We also cut right back on baths, letting skin produce its own oils and just get a bit mucky generally seemed to help a bit - but the goat's milk switch was like magic for us.

However, your daughter's case sounds much worse, so I'm sorry if this doesn't help.

[sbarry]

Gina - just wanted to add that breastfeeding is probably no different to dairy/formula*. I breastfed exclusively up to 1 year and my daughteer still had bad eczema. In fact it was probably at its worst at that stage :0

*Edited to add, purely in terms of dairy-related allergies/eczema

(lest I start an unintentional discussion on breastfeeding vs formula )

[david_carnell]

I also suffer from eczema as an adult and also did so as a child/teen all with varying degrees of severity.

I find it's worse at this time of year which I've attributed to a) less sunlight and b) central heating systems.

Try some extra vitamin D - mushrooms, fatty fish or supplements.

The change in humidity and heat at this time of year also cause flare ups to this day. This is difficult to manage in modern houses though.

Finally, stress is also a big cause. Whilst this is unlikely in a 4 year old in the same way as in an adult it's also possible that the situation surrounding the eczema begins to become a vicious circle.

Best of luck.

[shaunag]

The poor tot,and poor you watching her go through it. I would go back to gp and get v pushy about a referral to a paeds dermatologist. We were in a&e over a separate issue and mentioned our daughters eczema which the gp had said was infected. the paeds registrar told us to discontinue the cream prescribed by the gp and to use something else instead as what the gp had prescribed was likely to make our daughters eczema worse. The antiobiotics prescribed for the other issue were used to treat the infection and other options suggested to us for the eczema generally. Our daughters eczema was v mild by comparison to what you have described though. Gps have an important role to play but they are not experts.It might even be worth a trip to a&e to see a paeds registrar for their advice if you have to wait for a dermatologist and want someone with more specialism in kids to have a look,especially if it continues to be as extensive as you describe. Best of luck. Xx

[Gooders79]

Sounds horrid for you all... I found some of the advice on the national ezcema association website really useful regarding facts etc in managing ezcema.

I know you're not keen but We have found during flare ups steroids have been useful and treating for at east 5 days to treat the skin layers. portion keeps the scratching at bay a bit and hence stops the cycle getting very out of control. We were seen for something else at the evelina and they prescribed an emollient pack which was really useful to try a lot of different emollients to see which suited our sns skin the best. I've heard dairy and soya elimination can be very effective for some people too.

Good luck...

[cmacnew]

I know you don't want to hear this but I found that really only the steroids worked as a short/immediate solution to the eczema in my son (the worst for him was between 6-12 months)

We were at St Thomas for a separate viral issue and it led to a massive flare up, they had a pead dermatology consultant and nurse come and see us and they explained a lot about eczema. I was referred to a really good service operated by the nurses from St Thomas and held at Paxton Health centre for 3 mornings educating about eczema. I found it really helped me to understand it (as I could not sympathise, the allergies are all on my husbands side). Ill try and dig out the details and pm you.

My little one is now 18 months and it doesn't sound like he's as bad a your little one but we use Epaderm religiously twice per day and keep a stash of low grade steroid at the house just in case. Our GP would not refer to dermatology without us having tried steroids and I was so reluctant. It was only when he was in hospital and it got really bad that I decided to do it.

My sister in law has had some success with homeopathy in her now 7 year old. You have to be prepared for a long slog though as its a long process.

Good luck with everything

X

[Peckhamgatecrasher]

I'd go with the GP too, but you could look up natural Dead Sea products. I've been told that Germany send patients to Israel for treatment in really severe cases but I'm sure there is a cream nearer home.

[Pam50]

I so feel for you and your little one!

It's some 35 years since my then toddler daughter was suffering with atopic eczema. As Gooders above recommended, I contacted the National Eczema Society http://www.eczema.org/

There I found so much support and information...often having more up to date knowledge than my GP and health visitors. I started a local self-help group and met other families with their children. This was a great way of sharing strategies, resources (including out grown pure cotton clothes that cost a bomb in those days!) and others who understood the emotional impact of watching your child suffer.

I do hope you find helpful ways of coping with this difficult condition.

[Ramble66]

Aveeno cream and oatmeal baths.

[DulwichGlobetrotter]

I had terrible eczema all my life until I was about 20. I did everything and it kept getting worse. Steroid cream, bed gloves at night and swathes of aqueous and E45 cream. I looked like I had red gloves on and had tight skin that broke easily. It was horrible. I changed GP and the new GP suggested I use Diprobase cream instead of aqueous cream and use a stronger steroid cream (Eumovate) for a week. The results were amazing. Within 2 weeks I was back to normal. I couldn't believe it. It turned out I was allergic to Lanolin and so every time I used aqueous cream and E45 cream I was basically poisoning my skin. If you haven't tried Diprobase then definitely give it a go instead of normal aqueous/E45 cream. It was utterly life changing for me.

[Gooders79]

When we were at the evalina they said new research has found it is common that aqueous cream makes eczema worse...

[shaunag]

Ok have checked the names paeds registrar recommended/didn't recommend (but bearing in mind my lo's eczema not as extensive,so recommend you get specialist advice). The one he said to discontinue was fusidic acid (which h said was a topical antibiotic). He said (as well as her antibiotics for infection) to use epaderm, and if that didn't work a low percentage hydrocortisone cream. "steroids" sounds scary, but if it's what they need to get better and are really suffering,needs must. Also,for a lot of substances, there is evidence lacking re how much actually passes through the skin when applied topically; a large part of the functioning of the skin is to act as a barrier (so even though muscle creams people use may not actually deliver eg ibuprofen to the muscle). I dont know about steroids and whether there is evidence that they do pass through the skin (rather than just treating the top few layers), but if it really makes you uncomfortable speak to your gp about this. Good luck. Xx

[WorkingMummy]

My children all have this radically life-quality affecting condition. Like yours, there is no allergen or food which can be isolated as the cause. It is just what they have.

I surrendered to steroids, and thank GOD I did. VERY high strength topical creams were needed at first ? there is simply no point mucking about with light weight stuff that will not do the trick. They needed that cream - for two weeks, to get the condition under control. But it made the disease disappear, giving me the opportunity to step in with other measures.

Those other measures were simply: to throw away all soap and to wash them with aqueous creams in their evening bath. I have also found simple Vaseline to be way better as a post-bath moisturiser than any of the specialist emollients. This routine helps keep the condition at bay - but no way would anything other than steroids ever have got my children?s skin clear of eczema in the first place.

And even now, I have to scan every inch of their little bodies, every night, to look for the tiniest patch of rough, inflamed skin. And if I find any, I put the tiny, tiniest little bit of steroid cream on that exact spot. This is the only way to stop flare ups. If one of those tiny patches is left untreated, no matter how much cream and gunk I dollop onto it, the patch will grow and the unrelenting march of misery will begin. The emollient routine at night helps prevent dry skin but ONLY steroids actually halt and reverse proper eczema if and when it appears.

The result: my kids are exposed to really, very small levels of steroid, intermittently, and I have no concerns about side effects. (One large tube of moderate strength cream prescribed for one of my children, after they were free of acute signs, has lasted me over two years on three kids.) And they are eczema free. Which means they are not suffering, and they can SLEEP! (This is such a life-changer for them and me!) They are different children. Wish I had done it years ago.

For what it is worth, antibiotic creams can be highly irritating to LOs skins. My GP recommended pure steroid cream and oral antibiotics if a flare up becomes infected.

There is a NICE guideline. It is 100% evidence based. Reading it really helped me think logically about treatment and enabled me to spot the right advice from the right GP. You can get it at http://guidance.nice.org.uk/CG57

Good luck. I totally understand what your life is like. It really is an awful condition.

[Saffron]

Why do you say that you don't want to use steroids?

Your daughter was prescribed steroids, for use up to 7 days. You say she was better then relapsed, but you only used them for 3 days. Do you think you were mis-prescribed? That is, do you think you've been given the wrong dose/type of steroid?

Steroids are a much misunderstood and much maligned group of drugs. Generally, steroids (corticosteroids) are given to reduce excessive inflammation or to suppress inappropriate immune responses. While it's true that steroids will not treat the root cause eczema, it's also true that there is no cure for eczema. All treatments are symptomatic, working from different angles to treat different symptoms. However, in many cases steroids are appropriate and necessary in order to sufficiently control acute symptoms so that the body may heal itself.

Perhaps you need to push for a more certain, or more detailed, explanation of which steroid types/doses could be helpful. There are many, as others have described here. Then be open minded about following the recommendation. A paeds dermatologist with experience of eczema would obvisouly be the best person to consult, but again as others have pointed out, your GP is unlikely to refer you if you haven't at least properly tried the steroids on your daughter first.

All that being said, there's nothing to stop you from also trying some wholistic treatments at the same time. I'm thinking childrens reflexology, or childrens yoga to reduce stress maybe? xx

[Aldd28]

Hi,

I know what your daughter is going through, l have lived with eczema all my life. The winter months are the worst for me.

The one thing that did help alot was keeping a food diary, l found out in the end it was food combinations that made my eczema worse (tuna, oranges and eggs eaten within a couple of hours of each other). The starch in potato is also bad for me (only to touch).

It is trial and error, not changing too many things at once. What works for one person may not work for another.

[Bluemum]

My daughter, had really bad Eczema all over her body (from her 1st bday, she is nearly 3 now). Even her eyelids where covered! I paid ?300 for a Allergy test in Harley street just to be told she isn't allergic to anything (they've tested her for over 30 allergens) and probably her eczema was hereditary (husband has got it a little).

Searching on the internet for treatment alternatives, I've came across Hemp seed oil (sold at some big Sainsburys or Waitrose, "The Good Oil"). I've started giving her a 5ml spoon every morning. I also read that aqueous cream only makes Eczema worsen, so I stopped that and changed to Aveeno dry Skin moisturiser twice a day.

In my case, thanks to those 2 simple changes her skin has almost cleared out completely. She still has a couple of persistent patches, but compered to how it was before, I cant believe how much better her skin is.

Give it a go!

[duchessofdulwich]

lack of sunshine related to eczema ?

[Gidget]

I am selling some unused Aveeno lotion over in the classified sections. 2 400 ml for ?10 or 1 for ?6. I also have some unused Aveeno bath and shower oil. Very good with the extremely hard water we have here in London.

[Saffron]

I like Aveeno. I t lasts us ages. I think you can even ask for it on prescription if you go through loads. My daughter doesn't have eczema, but her skin is easily irritated, like mine. Also check the labels carefully, and avoid any creams that have SLS/SLeS (sodium lauryl sulphate, or sodium laurth sulphate) or parabens. I was surprised to find that even a lot of creams specifically for eczema and sensitive skin have these ingredients.

[GinaG3]

Thanks everyone for all your replies. There is too much to reply to individually. I've been absolutely bombarded with PMs also.

We've never used aquaeous cream, it's not advised by the eczema association as it is only meant as a soap substitute and not as a cream but is prescribed regardless! We have discontinued use of all Aveeno products as oat containing products are known to worsen eczema in some sufferers, as it did for our daughter. I avoid all SLS and SLE and nothing contain parabens or anything else on the eczema exclusion list. I wash all our laundry with Eco balls.

We have been through so many products I can't even think of them all. Diprobase, 5050 paraffin, aveeno, salcura spray, zeoderm, epiderm, this soya oil stuff and a bunch of natural stuff and more prescription stuff. I'm not keen on steroids because I've seen severe eczema in my family got through without it, no family members have ever restored to steroid use. My brothers was so so extreme he was covered head to toe, every inch of his body. My mum did a complete exclusion diet through breastfeeding then onto weaning, by age 7 he was fine. He was allergic to dogs hair, wheat, gluten and dairy. So allegies have come into play in my family, and are a common feature too. Wheat and dairy especially run in my family strongly.

I've now stopped the soya as I feel it was just making everything much worse. I am going back to consult GP. Might try and buy some of these silk tubes just to cover the elbows and knees whilst in bed after I've got this flare under control.

Thanks for all your messages. xxx

[Saffron]

Well, I can get through a migraine without codeine, but the codeine helps. Same analogy with steroids:eczema. Jus' sayin'. It doesn't really address why you don't want to use them. Is it side effects you're concerned about? xx

[Monkey]

I'd use the steroids to soothe this flare up but please do, do, do insist on a referral. Gps do not know anything about skin conditions.

From someone who was prescribed completely wrong medicine to put on infected skin by not one but four different gps. Dermatologist I saw after that went from pale to shocked to very angry.