4 yr old eczema out of control, we're desperate

[gingerninja]

The last 6 or 7 months have been awful for my family, mostly my DD who is suffering chronic eczema all over her body. We have tried so much that I'm not sure what to do, I feel helpless and desperate when I watch her tearing her skin to shreads and crying asking why she has been made like this.

We were refered to a dermatologist a couple of years ago who we've seen every few months and recently saw the nurses at our hospital for advice and management. I feel like we're being fobbed off all the time and just not getting support.

We are now using Eumovate oint steroid as HC stopped working. We are also using epaderm ointment emollient.

My daughter has the dryest skin I have ever seen and I'm applying moisturiser as often as possible, sometimes up to 6 times a day. Her face and scalp are particularly dry at the moment, and nothing seems to be working. She is having constant flare ups all over her body, we've been using Eumovate constantly for about 8 weeks now and just when it seems to clear from one area we get a massive flare somewhere else.

The eczema is increadibly widespread which makes it really hard to manage with steroids as we seem to be putting them all over her body.

I can't get her to stop scratching, we use ucerax anti histamine, and she's torn shreads out of her body.

She is generally miserable and irritable and hard hard work. (understandably) I try and make the creams as light hearted as possible but she hates it and fights me all the time, she screams and screams at bath time and in the morning when I pat her down and cream which makes the beginning and ending of the day increadibly stressful.

It is breaking my heart, she is such a beautifully natured, kind and sweet girl but eczema is taking over and ruling our lives, we are all at breaking point. Please can anyone offer any advice? Many thanks

Thanks for that, she hasn't yet. I've been requesting it for the last 2 years and have been fobbed off by the Dr saying that testing in children is more often than not inconclusive. They have, however, now offered it to me which we'll take asap.

Drs seem so reluctant to refer anywhere, not sure if it's an ego thing or what but they're not prepared to admit they have no further ideas so ask us to continue down the same pointless path

I've found it really difficult pressing for the next steps, just get blank and dismissve responses, I know I should be more forthright. It's hard

My daughter had dreadful ecesma and we saw a great ormond street consultant. He recommended cetraben, you can buy it over the counter, and also parafin wax 50% ?I think it was but not sure about this as was a long time ago.
Cetraben really helped her, a friend of mine whose son had had dreadful ecesma was also recommended it and it helped him tremendously.

Thanks, we've tried cetraban and 50/50, along with probably every emollolient you can get on prescription.

My dd was terrible,remember running to the doctors with bleeding weeping ankles sticking to her socks. Awful times. Yes bathing was like torture. My dd was peanut allergic so I always had the periton to hand. Dosing her up so much all the time. Doctors wasnt even refering me to a dermatologist with her. In the end luck was with us and I happened to speek to a very new doctor on the phone who had trained on the eczema wards and said come and see me I will refer her. Once in with the dermatologist I ended up asking for skin prick tests as I had always believed more was involved.They sent us to the peadiactrics. Low and behold tests after tests revealed multiple food allergies of differing severities. Nobody is very helpful/imformative but we muddle through ourselves. Food avoidance/limitations. From here things improved so much. Its not gone but wow she even wore a skirt to school this summer. She still itches but I would never want to turn those clocks back. Feel for you gingerninja. She even had the dustmite allergy also. Have you been down those lines with your dd. 60 degree washes for bedding, freezing teddies, anti dustmite pillows/duvets. Anythings worth a shot.

Hi Cholesmum, thanks for your message, we think dustmite is a problem and have about 4 air purifiers, expensive hoover (which I use daily) wash bedding at 60 degrees frequently and have hypo alergenic pillow etc. I don't think it's the only thing however but do feel it is a problem. Trouble is I can make my house as dust free as possible but when she's at nursery, other peoples houses etc it's out of my control.

I just want the poor love to have some respite and feel normal. She is a really girly girl and really wanted to wear pretty summer dresses like her friends, I was so glad when the weather turned cooler so she didn't feel she was the only one covered up.

Trying to get appointments with GP and Dermatology team today is a joke. two weeks before I can see the GP. I can phone at 8.30 apparently and sit on hold for half an hour to be told there are no appointments left but I have to do a school run. Feels like everything is against us.

Can't afford to go private but am considering it.

Your poor DD. I would press for the allergy testing and also ask for a referral to a tertiary centre (eg Great Ormond Street) for a thorough review.

The GP appointments situation is ridiculous. We have a similar system here (you aren't in South Oxfordshire in a town beginning with 'W' are you??). I ended up making a pre-bookable appointment every Friday for DS1, when his chronic ear infections were at their worst. I would cancel it on the day if he was healthy! This was a strategy recommended by the toddler group Mums...

Have you tried using oatmeal? Someone told me about it and couldn't believe how well it worked - my skin is clear now and it worked on DS too. Pop some oatmeal in a sock, hanky or whatever and make sure you tie a tight knot in it. Then run the bath water over it and use the oatmeal filled sock/hanky to gently wash your DDs body - it relieves the itching and redness like nothing I'd ever tried before. really easy to try and hoepfully it will work for her too. I'm now using Aveeno cream from the GP - a natural aotmeal based cream (can get ointment too I think) and bath emoillient. It's fab. And I am a verteran of skin clinic SOS lists and trying EVERY hydrocortisone and moisturiser under the sun - I looked like I ahd been badly burnedmost days, now as I say I only have very occassional flare ups. Hope that helps. take care.

I know you say you've tried every emollient but just need to check if you've tried epaderm? know a boy who had really bad eczema and told his mum about epaderm and months later she ran into me and told me her son was like a different child

Would you be able to go private? I know a very good paed in Portland Hospital who would no doubt know the right dermatologist. He is not cheap though (approx. £175 per consultation, tests on top).

Have you tried Camomile? We used Kamillosan nipple cream on our son. This stopped the itching. We bath him in camomile tea as well.

thanks for your messages, Maggiecat; yes we're using Epaderm at the moment, have been for about 4 months now. It's not really making a lot of difference, the skin on her body is kept a little more moist with it but it is sooooo sticky and gloupy and a nightmare to apply during the day. The nurse recommended mixing it with water during the day which makes a cream which is much easier to use.

We have tried the oats in a sock, in fact did that for some time, Doctors thought we were barking mad! I thought it was great, loved the slimyness of the oat milk, DD wasn't convinced. Haven't used it for a while, might go back to it. Aveeno, we have tried some time ago, trouble we're finding at the moment is that ALL white creams sting like mad because of the preservatives in them, hence why we're stuck on epaderm at the moment.

I'm not in Oxfordshire acebaby, obviously some dope has decided this system suits everyone.

Having discussed it with DH tonight we are going to try and find the money to go private. We need to give the poor love a break, she's not enjoying her childhood and the eczema is overshaddowing everything we do.

Am still open to suggestions and help in the mean time though please, in particular, How can I improve moisture levels in her skin even though I'm applying mosituriser 4/5/6 times a day and any tips on supressing the itch most welcome. Thanks again everyone for contributing.

I suppose you already ensure that she only wears 100% cotton directly on her skin? Also, we were told when dd had bad (inflamed) eczema as baby not to bathe her too often (only every other week!) and yes, junior oilatum and other similar stuff without fragrance and preservatives. It is really difficult when they start scratching.

If you want to go private, and don't know where to go, I would recommend to contact Dr Hay at Portland Hospital and ask if he could tell you (over the phone) which dermatologist to see. He himself is an excellent paed but I don't think that he is a specialist in eczema although he straight away recognised dd's rash and started treatment whereas 5 different local GPs simply thought it was a virus (they were all wrong and once treatment started it disappeared in no time, was such a relief!).

Good luck.

Have you tried switching to Goats milk?
Someone once suggested it for dd2 who had quite nasty eczema and it has pretty much cleared it up.

I assume you have tried aveeno moisturiser and piriton for the itch? Also, have you had cultures taken of any weeping sores to exclude/identify infection.

Have you spoken to your consultant about trying a short course of oral steroids to clear up her skin and break the cycle of itch, scratch, infection, more itch etc etc?

DS2 had dreadful eczema all over his body and we have finally got it under control using a very aggressive approach initially (under hospital supervision) followed by milder steroids and loads of aveeno. We found that all other moisturisers made him worse (I think this is an individual thing though)

I have a mad housekeeping regime to keep DS's eczema under control. I wont bore you with it.

BUT sometimes you need to go postal on the bloody condition so you can start from ahem, scratch.

We were at our tether's end with poor DS's skin. He was really suffering.

He was put on a course of Oral steroids for a few weeks. This was after years of trying everything. They worked like magic. Cleared his skin up and he looked 'normal' for the first time in his life. We knew the eczema would return but it gave him and us a break and a chance to start from a clean slate IYSWIM.

I know steroids seem scarey but they worked and his skin has never gone back to being as bad. He still needs a lot of managment but now we feel we are winning.

Hi, thanks for your comments. We're not affraid of using steroids, have been using progressively stronger creams over the last 4 years, I'm just taking the Drs lead so am happy to try anything. I think a stronger steroid is needed to blitz and then wind back down again but am now waiting an appointment to see the consultant as GP won't prescribe over what the consultant has already.

We have tried goats milk (uck) no avail, in fairness we haven't gone dairy free because I'm not convinced that's the problem, she got this at 3 months and was breastfed for 9 months with no dairy and I did a dairy exclusion diet while feeding for a while to see if there was an improvement.

Yes dikkert, just cotton, interesting what you say about bathing because we were bathing her very infrequently because she is just screaming the minute her skin touches the water. When we were refered to the hospital they said we need to bath AT LEAST once a day, pref twice, it became such a burden and a battle every day. can't say I have seen a great deal of change. I think the skin on her body is a little more moist but not the miracle that the hospital said it would be if we did what they were suggesting.

Yes, we're using antihistamines, piriton didn't work, valergan made her a monster and she was just so tired all the time we're now using ucerax which seems a half way house.

Got an emergency GP appointment this am, asking them to refer us to a private dr recommended by a friend of a friend in Loughton. Dr David Paige. specialises in peadiatric dermatology hopefully he will be our salvation.

Thanks everyone

ginger, I agree withthose that have saidlook at allergens. DS1 had dreadful skin, also had glue ear. We were recommended to take him off cows milk for hisear - whichcleared within 2 weeks. The side effect was that his eczema cleared as well. He has occassional flare ups now, usually from washing powder or other detergents, but outgrew his intolerance to milk by 6 years.

There is an allergy diet you can follow yourselves to see if there is any improvement based on excluding foods.....i think you start with lamb and rice and certain veg,and gradually add one common allergen a week-so dairy, eggs, citrus etc. to see if it has an effect.

I would be tempted to go down this route. WIll try and find details of the diet.

The only creams my dd could cope with was diprobase cream emollient as a moisturiser and dermol 600 lotion to wash with in the bath. They all stang but these we found the best we were given. I remember bathtimes were a nightmare, feel for you both. My dd ended up having various allergies to fruits and veg so its not always what you expect. We use surecare washing liquid for the machine.What about wet wrapping?Thats what we had to do for a long while with epaderm.Not easy either with stinging but did moisturise the skin and using with steriod made it absorb in more effectively. My dd also lived in the cotton comfort leggings so she could not get to her legs. As soon as she was home from play school to help stop the constant scratching. I could not send her many times a week due to messing up her legs and people dont understand do they. I remember other mums not understanding and saying well what about when she needs to go to school? She also use to use those mittened tops. Anything to stop the damage of scratching. She still wears long sleeve shirts to school to protect her arms but its managed better now. Yes epaderm is good for some things eg with the wet wraps and before swimming ect but its so so heavy and makes them sweat so much doesnt it.

Food allergies with dd are acompanied by hives, sore eyes, itchy ears and of course stomache pains and constipation. Does your dd have symptoms like these? Also my dd used to suffer aching all the time and Im sure that is another food allergy thing.

gongerninja - I really sympathise. My dd1 had horrific eczema from about 2 months old....the endless GP appts, prescription creams etc, our house was like a chemist. Miserable dd. I bullied the GP into referring us to GOSH and we never looked back. The paediatric dermatologist there showed us how to wet wrap and made sure we could get the bandages and creams (propaderm, also known as beclometisone) on prescription locally. Wet wrapping is a bit of a nuisance but soooo worth it. DD's life changed, and as a result so did ours! all I can say is it worked for us so please badger for a referral. Our GOSH doc was David Atherton, not sure if he still practises there but he was a godsend to us. Good luck - I now exactly what you are going through.

My son was very similar to this at 4. We were at our wits end and were given elidel. It isn't a steroid cream but a 'new' (ish) cure for eczema that has had some controversy in the states as there were suggestions it had links to skin cancer. We were very reluctant to try it but desperate and it was pretty much a miracle cure. We used it very sparingly for a couple of months and after that barely ever again.

We also discovered a housedust allergy at the same time and ripped out all the carpets in the house, replaced sofas with leather ones etc. In 6 months he was a differnt child and we now just use moisturiser.

ginger you really do have my sympathies. Your post bought a tear to my eye. Your poor little girl and poor you

Our lives were ruled but fecking eczema for a long time and all the judginess that went along with it

We dont bathe DS everyday as it didnt suit him. We did it for ages because we were told to and we pretty much totured him .

We see a specialist nurse now and she is wonderful. She knows her stuff and has been our salvation.

I really would say the steroids are what gave us the chance to get DS's condition under control and I dont remember any side affects.

I wont tell you how much I hoover and damp dust though - dont want to depress you