I really need to sort our dd1s eczema, but not I need an action plan.........please help

[MinkyBorage]

DD1, 4yo has always had mild eczema, inside elbows and behind knees, in the past it has pretty much disappeared in the summer months. For the last maybe 6 weeks, it has been awful for her, she has a little bit all over her body(except her face), but it is especially bad behind knees, and on her shoulder blades, it is all over her shoulder blades, and is extremely itchy, often bleeds when she scratches it.
Went to see GP and she prescribed 1 % hydrocortisone, which I applied morning and evening for a week and it made absolutely no difference.
Went back and she recommended aqueous cream, morning and night for a week and it looks worse to me.
For the last three days I've been putting on sudocrem (went away for w'end and left creams behind!) and it does look a bit better, but it still itches her a LOT.
In the past I've used oilatum lotion and it hasn't made much difference, but to be honest I wasn't applying it religiously, so that might be why. Same experience with epaderm.
1 capful of oilatum bath every night.

I've just seen a magazine article which said that aqueous cream can sometimes make it worse, is this right?
GP said to bath her less regularly, but I've read elsewhere that keeping the eczema clean is crucial.
I don't use soap on her, never have, but what can I use instead in the bath to remove existing cream and get her clean?
She had goats milk formula as a baby and I have always noticed that eczema gets slightly worse when she has cows milk, She still has goats milk now, but cows yoghurts, cheese etc but it makes less of a difference these days. Would it be a good idea to try her on soya milk?
I asked GP about allergy testing and she said that in her experience she thinks it's a waste of time. Any thoughts on this?

I'm really sorry, I just feel like I've let it get out of control , and I don't really know where to start with treating it.

firstly YOU'VE not let it get out of control, its a flare up, and may have spread no matter what you did, does she itch when she sleeps?
When i was young i had terrible asthma and exzema, i 1 wasnt flared up the other 1 was! my mum used vicopaste bandages, prescribed by the doc. If my memory serves me correctly they have no more steroids in them than hydrocortison cream. you maybe ask to try them. If not what i would do is put the cream on and buy bandages so she cant itch even if she trys. it works on the arms and legs!

YOu havent let it get out of control. Its eczema, it does that all by itself!

My DS has severe eczema, he has had it since birth and he is now nearly 7.

First thing it to get a referral to a dermatologist. GPs are not very good with eczema and you could be going back and forth for years.

Allergy testing is not a waste of time. If its done properly it can really help you manage your DD's condition.

Although I know lots of children are affected by dairy and other foodstuffs, be aware that food is not always or the only trigger.

House dust mites are a major allergen. DS is allergic to them and pollens and dog/cat hair.

I can only tell you how we manage DS's condition but not everything may be appropriate for you and your DD. I dont really have any experience of food as a trigger.

DS only wears cotton clothes
He only wears his clothes once before washing.
Change bedclothes once a week at least (more when in flare)
Wash clothes on 40 degrees and bedclothes on 60
Hoover and damp dust everyday.
Hoover bed when changing.
Dont keep stuff under the bed if you can help it.
Limit soft toys and furnishings in bedroom.
Non bio only and no fabric softener.
Air rooms everyday
Dont make bed in morning, turn duvet down to air bed.

Skin Care.
We bath DS everyday but he has short baths. If he has a long soak it makes him worse.
Moisturise 3 times a day (more when bad, used to be 8).
We have a battery of steroid creams and antibiotic creams but we tailor their use according to DS's skin. We have been doing this for a long time so know what to look for!
No soap
No bubble bath
We use balnaum bath oil. It suits DS better than Oilatum.
We use Epiderm moisteriser but it took us a while to find one that suited DS.
He has antihistamines everyday and a dose of long acting if he is going to the park or on a school trip etc.

If he has a bad flare we will use medicated bandages at the weekends to blast it. He has had oral steriods but they are a last resort.

His skin is (fingers crossed) under control at the moment. Its been a very long road to get it like this and he is still very itchy.

If I were you I would go a bit military on the eczema for a couple of weeks and see how it helps (a strict dusting/hoovering/moisterising routine). In the mean time though get a ref to a dermatologist.
At least if all your housework doesnt make a difference you will have a sparkly house and know that housedust isnt your DD's problem .

Stick with the goats milk.

I would bathe her less and try to be more religious with the emoliating. It's a nightmare. Can you turn the central heating right down in her room. Do you have a humidifier to keep the air moist?

We've used aqueous cream on dd1 26 mths since she was 4 weeks old and it has never made it worse. I sponge her down with hit morning and night and wash her hair with it. That's how I keep her clean rather then bathing her. You need to try to preserve some of her one body oils and thus skin integrity and frequent washing does the opposite.

Have you piriton antihistamine liquid for when she just cant stop scratching?

I have a .001% (I think) steroid that I apply every day all over. It used to be twice a day but now I am pulling back and just put it on the patchy bits once which was a lifesaver after a year of a red raw baby and multiple creams that worked for a couple of days before it came back worse then ever. We took dd privately to see a consultant at great ormond st who developed this cream. Let me know if this is a route you are considering and I can email you his details.

What is her diet like generally? Does she get plenty of essential fatty acids. Omega 3 & 6. Eskimo Kids (Any good supplement store) comes in 2 flavours. My dd will lap up as much tutti-fruiti as I'll give her. Is she allergic to nuts and seeds? If you you could grind linseeds and pumpkins seeds and sprinkle on her porridge, full of zinc and essential fatty acid.

It's v. v. frustrating. Good luck.

Should have done a read through before posting

DS was always much worse in the winter, although he seems to be growing out of it now (at nearly 6 yo). Aqueous cream didn't help him at all. We found Aveeno bath oil very helpful (the oat-based one). We also used Aveeno oat cream regularly, usually twice a day. There is also an Aveeno Itch Relief cream, although it can be quite hard to find. It did sooth DS's skin quite well.

I changed his washing powder to Filetti and I always do an extra rinse at the end of the wash.

Also, oatmeal in a muslin or in the foot of a pair of tights held under the tap while the bath is running is very soothing for itchy skin.

Ah, thank you for replies. Brilliant.
littlemissfixit, She doesn't seem to wake up with the itching, but it is often red and sore when she wakes, so I guess she's itching in her sleep. I like the sound of bandages, that could really make a difference to her.
chegirlsgotheartburn, oh my goodness, your poor ds, it sounds terrible. Thank you so much for the post, that's brilliant.
Oh no re hoovering daily, but I really understand, that makes perfect sense. I'll do that for a couple of weeks.
I'll make new gp ap't tomorrow and get referral.
Good point re changing bed clothes weekly. She's in the top of a bunk bed so hopefully that should help a little.
I'll work out a proper plan tomorrow. Thank you.
I do feel like I haven't really helped her a lot until the last 3 weeks or so, I feel like I've faffed at it and only moisturised when I remember rather than twice a day, or more. Anyway better late than never I guess!

Get a referral to a specialist, GPs really don't know that much about eczema. It is def. worth pushing for allergy testing, although by this age you would probably have noticed any severe allergies -- DS1 has eczema and egg allergy.

Aqueous cream is not recommended for eczema sufferers as many are allergic to it.

1% HC may not be strong enough to get the flare-up under control, you may need to blast it with something stronger for a few days (Betnovate is good stuff) then step down to HC once under control.

Current medical advice is to bathe at least once a day using specialist bath oil. But as with all things eczema-related, not one solution fits all and some people will find that fewer baths work better for them.

We just use Oilatum in bath and Doublebase twice a day, plus HC on flare-ups (thankfully getting less common but like others, DS1's can be triggered by cold or hot weather).

Chegirl's list is more exhaustive than mine and v good advice.

almondfinger, YES,please, I was thinking of taking her to see someone privately, and would love a recommendation, esp Gt Ormond St. No, nowhere near enough omega, have some eskimo kids stuf, but she wasn't keen, and I haven't tried her again. I'll get some fresh tomorrow, as what I have has probably expired I've had it for so long. Great re nuts and seeds.
Bran, I'll have a look at the oat cream, that sounds great, I've tried the porridge in tights thing in the past and it was great, but I'd forgotten all about it. Thank you. I alternate between waitrose sensitve skin washing powder one week and ecover the next. Maybe filetti would be better, I'll try it

thanks MegBusset.

email me at sally mccarthy at hotmail dot com and I'll maill you the details.

Dont feel bad about the faffing . I think most of us faff about for a while before we really get a handle on what is going on.

Dont be too freaked by my regime. I only do it because it works. I wouldnt dream of all that domestic stuff if it didnt

A good reason to have a strict routine is that it makes it easier to monitor what works and what doesnt.

It will take a while to get the hang of it and even with the best routine you may get flare ups.

I used to be in despair over DS's skin. Most people seemed to assume I ignored his skin. Only a few months ago I had his teacher asking me if I 'could do something about his excema, its hard for us to watch him suffer like that' So of course I took him home and cured him overnight

I still have people approaching me in the street and telling me 'he has eczema, you should get that seen to'.

Good luck. Eczema is a very hard condition to get on top of. Dont beat yourself up.

have emailed you almondfinger, thanks.

chegirlsgotheartburn, I am pretty freaked out about the hoovering , but it really needs to be done. Your routine sounds great, very impressive.
How annoying re people mentioning it the street.
Thanks

Ds's eczema sounds quite similar to your dd Minky. I also wondered about dairy but I don't think it's a trigger for us - mild eczema runs in both sides of the family with most of us growing out of it, and going by my uncle, dad and grandfather getting it again in late middle age .

Ds's skin is definitely worse when he's in a centrally heated house. It got really quite bad over Christmas when we were at my parent's very warm, dry house and is much better now we're home (baltic, but not so dry). That might explain why summer is better for us too.

I do sympathise. I hate it when ds wakes up crying with "sore knees mummy".

Right off to bed, I need some rest if I'm to be hoovering in the morning!!
Huge thanks all, I feel really focussed now.

When ds's eczema is red and sore Fucidin works better than just hydrocortisone for us. Just a few days worth.

We were advised to use Diprobase (or similar), then escalate to hydrocortisone cream if worse, then escalate again to Fucidin if red/broken skin. This has worked so far. We're lucky that it's quite mild and amenable to treatment so far.

You can get doc to prescribe these tubifast products and put emulsifying ointment on her before she goes to bed. You can also use emulsifying as a soap substitute although it is messy.
E45 and aqueous cream sometimes sting some people ,so ive been told at the pharmacy.
Diprobase is a good emollient cream.
Used it on DS2 when he got burnt.

www.skincareworld.co.uk/pharmacy/our_products/tubifast/bandages.htm

We tend to find that creams work for a while and then it's as if DS's skin get used to it and it doesn't work as well, so we tend to rotate between different creams when we feel they are not working anymore, same with bath stuff.

I would ask for 2.5% hydrocortisone to get this flare up under control as 1% sometimes isn't strong enough.

we give out 2.5% hydrocortisone cream/ointment so rarely as it can cause really badskin thinning especially in children.That strength is normally under advice from a dermatologist.Out of a patient group of 32,000 we give out the 2.5% to just one patient.

Minky, replied with all the details.

Thank you all, I really appreciate all the ehlp and advice, and thanks almondfinger for the email.
alypaly, very interesting about the tubifast bandages, especially the garments, I'll mention that to the GP.
Longer update another time, but thank you

Ds eczema has deff got worse this winter he is having a really bad flare up. We use diprobase cream and only bath once a week so that his skins oils can try to do their job. Previously when it was like this all the time I found goats milk really helped a lot and surecare washing liquids where good. I tried a full on cleaning approach for a while but it did not make any difference. For us I think it is all down the the weather, central heating etc. meaning his skin (just like my hands) is not makeing enough oil. I love the idea of giving more oils via diet and vitamins, so I will be trying that thank you.

good luck, minky. LOts of good advice here.

I'd just echo what some others have said - 1% is probably nowhere near strong enough to get this outbreak under control. You need to keep pestering your GP until s/he enables you to get it back under control.

Dail baths worked well for dd2 - always with an emollient in it of course and followed by the creams straight after - so do try out frequent baths as it can work for many.

Can I just further emphasise to ask your gp to refer you to a dermatologist?

My ds now attends a nurse-led dermatology clinic which has been a God-send. He had been hospitalised with his eczema - his skin had been broken by scratching and got infected.

Short baths (10 mins) in tepid water (less likely to irritate) is important to keep skin clean. We found wet wraps at night-time the most effective (steroid-free) control. Longer-use of a milder steroid (1%) could be more detrimental than a shorter blast of a stronger steroid cream. Again, this needs to be under the advice of a dermatologist.

Hope this helps a little.

as an adult sufferer:

ecover powder aggravates my skin but the liquid is fine.

aveeno is the only emoillent that works.

wool against my skin causes flare ups.

bath/wash with oilatum. can you wash hair over a sink so the shampoo doesn't go everywhere?

if there is a flare up the only thing that will make it go is a steroid cream. i have elocon tis fab, my mate has betnovate and it works incredibly fast, huge improvement within hours.

you cannot moisturise enough. when i am regimented with 3 times daily aveeno i rarely get a breakout.

for a flare up moisturise, aveeno or whatever works as often as possible along with the steroids twice daily. once the flare up goes (if it doesn't you need a different steroid)continue with loads of emoillent to help repair the skin.

keep her nails as short as possible to help prevent breaking the skin.
hth