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Used anything that has helped severe eczema?

(52 Posts)
mummy2oneboy Tue 25-Jun-13 15:09:58

My DS developed eczema at about 8 weeks. It started as just small patches which gradually spread over his entire body. He is now 7 months old and after months of waiting to be referred to the hospital we have now finally seen the dermatology nurse specialist for what it was worth! We have tried E45, Aveeno, Diprobase, Epaderm, Dermol 500, Oilatum Cream, Doublebase, 100% unrefined shea butter, Lush dream cream, Vasaline, the list goes on you name it we have tried it. None of these used so far seem to have made any difference. The only thing which seems to make the eczema disappear is Betnovate cream but as this is a potent steroid we have been advised to only use it for 5 days at a time, dropping down onto Betnovate RD for a further 5 days and in theory then reduce the steroid strength again to hydrocortisone, but his skin is never good enough to be able to do this.
We were advised to put him on a dairy free diet and from 5 months (was BF until then) we have given him Nutramigen milk formula on prescription but again this has made no improvement.
Has anyone else been in a similar situation and been referred to an allergy specialist or found anything that works for severe eczema? I am considering going private as I hate to see my little boy in so much distress.

gretagrape Fri 09-Aug-13 07:28:24

We've used Neals Yard ointment - it's part of their create your own range and is a really basic moisturiser (body butter consistency) - cleared up eczema on arms and legs in a couple of weeks.

Timpetill Fri 09-Aug-13 07:37:06

Glad you're going to see a specialist, any health professional who says you just "need to live with it" is an idiot. My DS 5 still suffers but we keep it under control with steroids when necessary for flares, Aveeno cream to moisturise (the oats in it are soothing), avoid soap and sand and wool as these cause itching. When he was one we had him allergy tested, he's allergic to lots of foods so we avoid all those. He's much better than he was, and though he is still allergic to everything at 5 we have hopes he'll improve as he grows older. Good luck, when the treatments started working I could have wept with gratitude!

Galaxymum Fri 09-Aug-13 23:55:51

OP I do feel for you. Sending you big hugs. I've suffered from eczema all my life and recently was prescribed a different based emolient which has done wonders. It is Calmurid - the active ingredient is urea. If your DS has very dry skin this base could help - the less active version is called Balneum Ointment but isn't quite the same as the bath substitute. Honestly I've seen a huge difference in my skin so it's worth asking to try.

Otherwise like other posters I would definitely look at allergy tests and elimination diets. It is difficult but well worth the effort. And he is an age you can completely control his diet. I do hope you get some relief.

My DD has eczema and we bought her pyjamas from eczemaclothing which is recommended by the Eczema Society. They are expensive to invest in but they stop her scratching at night and also she can wear them when her skin is bad during the day. They wash brilliantly and ours have lasted ages.

morethanpotatoprints Sat 10-Aug-13 00:01:14

I would second the coconut oil with turmeric added. You will need to be careful with staining clothes etc, but so worth it.
My dh has a rare skin complaint and has been prescribed so many drugs over the past 20 odd years. Nothing worked until this and the usual symptoms and infection have gone.
The doctors and specialists won't accept this as it doesn't allow them to peddle drugs. I know this is awful when it is a child's health, but its true.
please give it a try. If you get to Holland and Barratt its the penny sale now.

Oldieandgoldie Sat 10-Aug-13 00:22:56

Try using liquid paraffin (from the chemist!) as a cleanser at nappy-change time, it worked wonders for us!

mummy2oneboy Sat 10-Aug-13 16:26:40

We took ds to a private doctor who works at great ormond street and I am so glad we did. The improvement in our sons skin over the last month makes me feel so much more positive. He now only has minor flares on his cheeks and the rest of his body is pretty much clear. He still scratches sometimes but think this is just habit after 7 months of constant scratching. The dr wrote to our gp and we are hoping to get the medicines he prescribed for free from the gp from now on. Best money I have ever spent.

EssieEttie Sat 17-Aug-13 21:56:44

Hello mummy2oneboy. My story sounds remarkably similar to your own and I was just wondering what your son was prescribed at Gt. Ormond Street? The reason I ask is we are currently considering asking for an appointment also and I am wondering what else could possibly be out there that we haven't already tried/been prescribed (am sure you felt the same!)

Ours is an incredibly long story that I won't go into here, but the latest is we saw the Professor of Paediatric Dermatology he is under again a couple of weeks ago who informed us that the eczema still isn't under control and prescribed him a topical immuno suppressant which isn't licensed for the under 2s; may or may not be linked to a number if skin cancer cases and if applied too thickly will penetrate the skin layer. Losing hope now that the little fella will ever be able to wear a t-shirt and we will ever get a night where we are not up every couple of hours stopping his frantic scratching (amazed at the damage he can still do with every part of him covered other than the head and very short nails!) His current regime is Eumovate twice daily pretty much all over (including face) and Epaderm all over as often as possible. We bathe him in Dermalo also. I'm not sure why he was prescribed the immuno suppressant rather than increasing the steroid strength to betnovate, makes me wonder whether the consultant thinks the steroid cream route isn't working for him. Eumovate just seems to take the edge off the eczema and prevent infection in our opinion. Anyway, so very glad to hear your son is much improved and would love to have any further info you may be able to pass on to me.

lymeregis Sat 17-Aug-13 22:08:58

Cetraben. AMAZING - over counter. Do try it. Not read whole thread. Apols in advance for repetition.

Bumblebee78 Sat 17-Aug-13 22:20:30

We have tried oilatum in the bath, diprobase, betnovate, eumovate, fucudin, dactarin, you name it. Ours had numular eczema, so looked like a leopard. He now has mostly grown out of it on his body, but does get break outs everynow and then.

He does suffer quite badly on his cheeks...on his face. We took him to see a private consultant who put him on elidel. He said it was safe to use long term, but i have since read really bad things on the internet about it, so wish we hadnt used it, which we did for almost a year!

He still gets break outs on his face fairly regularly which we treat with a hydrocortisone cream to lessen the redness, and the doc prescribed an emollient called hydromol.

Hydromol is just like lard, it smells like petrol and is really greasy, but seems to work on stubborn dry skin.

Worth a try, good luck.

adagio Sat 17-Aug-13 22:30:02

I agree with Oldieandgoldie my 8m old has greatly improved with 11% Liquid Paraffin recommended by the HV. The tub says 'Emollient 50' on it.

I suspect reading they thread she is not as bad as some on here, but having tried Doublebase, Diprobase, Aveeno, E45, Almond Oil etc - basically all the 'brands' the GP suggested along with 1% Hydrocortisone (as needed off and on with the steroid).

I was surprised this stuff which seems to be cheap, non branded and not well advertised seems so good. Been on it for about 3 weeks now - its the texture of vaseline and makes for a very slimy baby but helps stop scratching (she can't grip so well due to the slip) and her torso has gone from covered to just a little bit left under her chin (as with most babies, she has no neck and is a bit dribbly).

No doubt won't work for everyone but may be worth a shot.

Oh and rinse rinse rinse the washing - new machines don't rinse so well to save water. I notice a big difference both in how the washing smells (much more fragrance) and her skin if I don't press the extra rinse buttons on the machine.

oohdaddypig Sat 17-Aug-13 22:42:26

Hi OP. sorry about your little boy - I know first hand how distressing it is.

I tried every cream known to no avail until, in desperation, I tried the body shop hemp body butter. I know it sounds ridiculous as its perfumed and not particularly "natural" (believe me I tried them all) but the body shop stuff is the only thing that works. Only the body butter - not the other hemp stuff. And none of the other body butters.

Also after much trial and error I worked out a significant trigger was all clothes detergent. Even the non bio Eco stuff. So we wash our clothes - not just babies - in some coconut based stuff from the local health shop.

Doing the above changed DD from looking like a scaly lizard with infected eczema to 90% better.

Doctors told me firstly she couldn't be allergic to detergent - but she is!!! Also told me to use all sorts of creams ALL of which made her worse because she reacts to paraffin.

Good luck OP - hope this helps.

oohdaddypig Sat 17-Aug-13 22:50:29

OP - where about is your baby's eczema. Is it all over or concentrated on back etc?

I am not saying to ignore medical advice but certainly in my case following my instincts was far more fruitful. If I had followed doctor's advice I hate to think where we would be.

Makes me quite annoyed looking back that there was a blanket "no way" to my suggestion of it being environmental.

I think there is usually a trigger and its a question of finding it. My baby's body looked like she had third degree burns it was that bad - all clear now.

Kbear Sat 17-Aug-13 22:56:24

My DS had terrible eczema when he was a baby - I read somewhere about a child that was allergic to BANANAS - I cut them out of his diet and within two weeks his skin was recovering.

Ironically, they were his favourite food and I ate loads of them whilst b/feeding him.

Please try this, I do hope it works for him and anything is worth a try.

He didn't eat bananas again until I introduced them gradually just as he was starting school, with no ill effects.

He is now almost 12 and his skin is lovely and unscarred - considering his skin used to crack and bleed, especially his face, it is a miracle how soft and lovely his skin is now.

EssieEttie Sat 17-Aug-13 23:18:09

Hi oohdaddypig - very new to mumsnet so not quite up to speed with all the initials (op - original poster??) but do you mind me joining in and asking if your baby was ever prescribed steroid cream at all and if so, did that have much effect? My son's eczema is literally head to toe with the only clear area being his nappy area (which makes me think there must be something in the urea comment somebody made earlier!) I am currently using Waitrose sensitive skin liquid but I'd be really interested to hear what the coconut based liquid you use is? Despite being told to wean him carefully (avoiding egg and wheat until 9 moths), we're pretty sure his trigger is environmental (v interested to see his face had flared badly after a day in London once. The next time we went we wiped his face with water from time to time and there was only a slight flare.) Do you also mind me asking whether you used the body butter as a moisturiser when the eczema was under control, or did you use it when the skin had flared also? Apologies again for muscling in, but we are at the end of our tether!

oohdaddypig Sat 17-Aug-13 23:33:42

Essie - no worries - I'm happy to help as I remember how distressing it is. I spent hours online.

Will post name of detergent tomorrow - in bed now - it has a cute penguin on it. I also use soap nuts (can buy them on amazon) but they aren't as good at getting clothes clean. Dd is so sensitive that her eczema flares on her legs if she sits on someone's lap whilst wearing shorts!

The reason I suspected detergent was because dd's nappy area was the only clear bit. I had to wash all her clothes twice to get rid of the detergent.

It was my mum who suggested the hemp body butter as it worked on her psoriasis. I - shamefully - mocked her and said no way would it work given how many other creams I had tried!! I put it directly on, at least three times a day during a flare. I keep meaning to try pure hemp oil to isolate the magical ingredients. I also tried a natural hemp cream but that flared her - I think due to the coconut oil, which surprised me!

Hang on in there - you will get to the bottom of it.... I think dd reacts slightly to eggs/dairy too but not badly enough for me to eliminate them. Right now her eczema is minor so I hope this gives you hope...

Ps I didn't open the steroid cream. I think it's ok in the short term - to calm things down. The only reason I didn't was that I knew by then she reacted to paraffin - and it's in the steroid cream. Think it's unusual though.

oohdaddypig Sun 18-Aug-13 09:02:35

Hi again - the washing stuff is called "attitude".

I promise I work for neither this company, or the body shop!

Please let me know how you get on.

Ps my dd's eczema was infected and so we needed amoxicillin to reduce the infection. Then started on the cream. Even when on holiday I do three empty washes in the machine to clear it of previous detergent...

EssieEttie Sun 18-Aug-13 10:29:14

Brilliant, thank you! Will definitely give it a go. So glad your dd is much improved and hoping we get somewhere very soon with our little chap.

Another line of investigation for us at the mo is water. Where we live it is very hard. We have reduced his baths considerably over the past couple of weeks to try and get his skin under control and I have to say, it is improving (in conjunction with steroids and emollients) - goodness knows where we go from here with that one though!

mummy2oneboy Mon 19-Aug-13 10:28:28

Hi EssieEettie. We too live in a hard water area. We were actually advised to bath every day which went against what we had been doing. The regime we were advised to follow by the consultant paediatric dermatologist (Dr David Atherton) at Great Ormond Street Hospital was as follows. Bath every day with nothing in the luke warm water other than using epaderm cream as a soap. After quite a quick bath apply 50:50 emollient which is white soft paraffin mixed with liquid soft paraffin. The emollient has to be applied to the whole body(our sons eczema is everywhere apart from the nappy area) at every nappy change or every couple of hours. The face which is an area which was probably the worst ideally should be applied hourly at first. The steroid we are now using is Beclometasone Dipropionate Ointment 0.0025%. We had been using Betnovate which as im sure you will know is a potent steroid. The Dr advised us that this was not a sustainable long term treatment as it is too strong. Esp for his face. The new steroid is 1/10 of the strength so at first I was very dubious that it was going to work. Within 2 weeks the transformation was incredible. His skin slowly started to go back to being how you would expect baby skin to feel. I am not going to say that it is a complete miracle as he still 6 weeks on gets tiny flare ups but when I say tiny I really do mean little patches which go away within a couple of days. The scratching has virtually gone away apart from his head which he still scratches at when he is tired but I think this is more down to habit.

This steroid seems to be prescribed to a lot of other Dr Atherton Patients and I have yet to read a bad review about anyone who has gone to him. Sadly he only works privately now at various different clinics but knowing what I know now I would have substituted a lot of things to pay for this treatment. You might be able to get your own GP to prescribe Beclometasone (the strength I was told is very important so make sure it is 0.0025%) but Dr Atherton said that a lot of his patients have struggled to get their own GP's to prescribe it as it is expensive. About £90 for a 500g pot. I am still on the same one I first got so think it would last about 8 weeks.

Sorry this is such a long post but if I can help other people with babies that are suffering in anyway I am more than glad to help. Severe eczema consumes both your own and your babies lives.

Graceparkhill Mon 19-Aug-13 10:36:10

This is written from the pov of my adult ( husband ) obviously who has had chronic eczema since childhood. Our DS2 had mild eczema but is now fairly clear.
In DH's view management is the key- keeping cool and ventilated / avoiding rough fabrics and importantly not being afraid to use the steroids as prescribed.
There is a large amount of trial and error which is obviously very hard for you.
GP told us that many people are scarce of the steroids so apply to sparingly and stop too soon.
We used a special Swiss washing powder -Filetti?- for a while but have now reverted to Ariel/Persil with no ill effects.
DH eczema is largely under control and DS2 has only minor flare ups so it can be done.
Good luck!

megab Thu 05-Sep-13 23:36:34

I found that taking my DD swimming was good, the chlorine really helped her skin.
Also eliminating fabric softener from the wash transformed her skin, although you've probably done that already.
Eumovate ointment helped the bad patches of skin. we have just been given hydromol and told to moisturise her 4 times a day, this has really improved things.
I pushed for an allergy test and they have finally relented, so just waiting for appointment. Keep at them, don't give up! x

mummy2oneboy Sat 05-Oct-13 18:12:08

Well 2 months down the road and my sons skin looks good as new. I really cannot believe the transformation over the last 2 months. It now feels and looks exactly like baby skin should. We still use the cream the doctor in London prescribed twice per day at the moment but are hoping to reduce that soon and see if the lovely soft skin remains. I cannot recommend a visit to Dr Atherton at Great Ormond Street enough.

eragon Sat 05-Oct-13 18:45:35

ENVIRONMENTAL allergies?

its not always food related, dust mite is a common trigger and was a huge problem for my son when he was younger.

son and daughter are allergic to dust mite, tree pollen, hay fever, mold , cats , dogs.

as well as food.

my had 50 50 mix of soft and hard parraffin, and twice a steriods.
moisturized at least 5 times a day.

keep on pestering about getting better medical care, and allergy testing.

good luck.

Wolfiefan Sat 05-Oct-13 19:27:20

So glad you and your poor little one have some relief. Hope the cream you need will be prescribed. (Noisy question but I'm wondering what it was!)

mummy2oneboy Sun 06-Oct-13 21:38:30

eragon - believe me I feel like I have a constant battle with my GP surgery. We are still waiting for an appointment to come through for a referral to the allergy clinic at the hospital. Contacted them just last week as already been waiting over 2 months, only be told that the hospital hadn't received anything from the GP and yet the GP claims to have sent the paperwork. Such a shambles.

Wolfiefan - The cream we apply is a very mild steroid called beclometasone 0.0025% the percentage is apparently very important. In my eyes a miracle cream. Months of misery finally feel like they are over for me and my boy. grin)

Pistillate Sun 06-Oct-13 21:52:07

Where the face is particularly badly affected, environmental allergies should be considered.

Somebody linked the nice guidelines.... IF YOUR CHILD's ECZEMA IS SEVERE YOU MUST READ THEM

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