Excema - sick to death of it, anyone been referred to a specialist or dermatologist?

[oliveoil]

dd has had excema off and on since she was around 6 months old and it just is not getting any better. The worst bits are on her face, I use the stuff prescribed, it goes and then comes back with a vengence when I stop. Her face today looks like she has been burnt . She has a patch behind her knee and bits on her thighs.

Really getting me down and the docs seem to know next to nothing apart from telling me she will grow out of it when she is 1, well she is now 16 months.

Has anyone been in a similar position and been referred to a specialist or will I end up with another bag full of shite creams.

Thanks

Are you using steroids? If you are you need to taper- not just stop otherwise it will come straight back. Even hydrocortisone needs to be tapered.

I did get an emergency referral to a specialist (and was seen on the NHS within 2 days) but ds1 didn't have a single patch of clear skin - except om his feet and the GP was worried.

You could try wet wrapping with emollient - that often helps.

Yes I use a steriod cream called Dactakort (?) but was told to use it for a week then have a 3 week break then start again. I have used loads of others over the months but none seem to work.

Do you think I should use it more? My friends son has far worse excema than dd which makes me think I am getting worked up over nothing, its just being on her face and her itching and itching.

Also concerned if it will 'thin' her skin.

How would I do the emolient thing on her face?

Questions questions

We were finally referred to Dr Atherton at Gt Oromons Street and paid to go privately 0 even then it took a while and by the time we got the appointment my daugetr who'd been much like yours was clear. What eventually worked for us was quite heavy steriod use to get the skin completely clear and then serious bathtime routine of oilatum in bath and then Unguentum smothered all over her - even where her sin wsa clear- morning and evening. NO guarantees it will work for you as everyone so different but we'd tried the lot herbalists, homeopaths, cranial osteopaths and in the end steroids and emollients worked. Oh and she never ate eggs or milk cos we had an allergy test and it showed she was allergic.
You have all my sympathy - it is so distressing to see them suffer

whoops - that should be Great Ormond Street

OO - Have you seen the other thread about Aveeno cream? Seems to work for lots of us. Give it a try. Hope she improves soon.

Oliveoil please let us know if the Aveeno works, I am having the same problem dd is 5months, and it is very bad in my family so I am worried.

carry on bugging your gp for referral. most dont have a clue about eczema i'm afraid. dd1 see's a lovely specialist at hertford and i sing his praises all the time. have u tried the special sleepsuits available, pricey but excellant for stopping night time scratching. i'll dig out the link in a bit.

as for the growing out of it thing, dd1 consultant hopes she'll grow out of it within 2years but given that fact she is now dx as atopic and is prone to allergic reactions, asthma and eczema i'm not pinning my hopes on it.

have they given u emoillants? there are also wet-wrap garments available now on perscription i belive, am going to ask for thos tomoorrow am as dd1 has to see gp to update her perscriptions.

oatmeal baths are meant to be excellant, as is aveeno, i havent tried these yet as dd1 ezcema is under control.

Hi.

My son, now 5, had very bad eczema from birth - over most of his body, but especially his face. I tried all sorts of creams and gunk. Some periods I was applying hydrocortisone 2/3 times daily. I understand how awful it can be - not knowing if you're doing good or harm. After a year or so, I stopped using it and stuck to moisterising his skin every few hours.

The GP didn't seem to know much about it. I tried allsorts - even homeopathy - which was the biggest waste of time and money!

He has pretty much grown out of it now - not that I thought he ever would. His skin was much better from the age of 3, I'd say.

Have you tried using the "Surcare" clothes washing range? It was all I could use that wouldn't bring him out in a flare.
Also, after trying many creams, the GP prescribed my son "Hydrous Ointment". I had to apply it 3 times a day - much more initially. It's the best emollient we've used and I still use it on him after bathing.

Protopic cream is a non-steroidal cream for eczema. Gps are unwilling to prescibe it as it is very expensive (£80 a tube on a private prescription). It works wonders where steroids have failed. We have an NHS prescription for it as I was worried about the continual use of steroids on ds (especially on his face and neck). It clears skin up within a couple of days, takes all the redness out overnight, it is just brilliant. Our gp wont prescribe it (budgets of course), but the hospital was happy to . Push for a referral to a hopsital specialist - if you are near to London, Dr Atherton at Great Ormond St sorted out ds after many other doctors had failed, like Carriel, we saw him privately as the NHS list was 6 months.

Good luck, ds' eczema ruled our lives for 2 years, I remember how distressing it was.

Seeing Prof Harper at Great Ormond St on Wed about ds2, who is almost 6 months. He has had eczema since about 5 weeks. Oatmeal baths and aveeno have reduced it by about 90%, but he still can get quite bad on his cheeks and chin if I don't use hydrocort, and also backs of knees, elbows etc. I'm really not happy about using HC so much on the face of such a little one, but I'm not sure what I'm expecting Harper to say as he is too young for protopic I think. We'll see!

Sounds like my story oliveoil. My Ds is now 13mths. We have been seeing a specialist since he was 9mths. I think he is allergic to eggs. Hydrocortisone or protopic or elidel didn't work for us. What finally worked was Elocon - which can only be used for 3 weeks at a time. I stopped and one week later it is creeping back and I am fighting it hard with emollients (vaseline/parrafin) and low dose HC. Specialist has predicted he will grow out of it around 2. Worst thing for it is the warm dry air of a heated home and so make sure I open the windows regularly and he has a cool mist humidifier in his room. HTH

PPH, there is a weake protopic - 0.03% I think, The adult strength is 0.6%, this is usually prescribed for all over-2s.

i was just about to start a new thread about eczema when I read this one. My DD is three months and has it very badly in all her folds plus around her neck. GP prescribed 2% HC which worked for a week and now come back with vengeance. I wondered about wet wrapping as I've read about it on other mumsnet threads and mentionned it to my GP but she was dismissive and said it was 'old-fashioned'. However it seems to make sense to me as my DD gets very dried out overnight. Do any of you have experience of wet-wrapping, do I need to see a specialist before I do it?

Went AGAIN to the docs on Monday and saw a different woman who checked dd out and said, as upsetting as it was for us/dd, they wouldn't refer in her case as she only had isolated patches and it wasn't a bad case. Hmmmmmm. I sort of know what she means but it's still distressing to me!

She gave me some new bath oil and Aveeno and told me to switch to Fucidin. The Aveeno has already helped the patches on her legs but her face still looks horrendous. Got to go back in a week and get antibiotics if the Fucidin doesn't work.

She also had a reaction (bad face rash) to peanut butter on Monday even though she has had it loads before, can allergies develop this late??

Buttercup - I haven't used wet wrapping but I think there is loads of threads on it on here.

My DS had 90% coverage of excema when he was six weeks this went on for ages because the GP told me it was heat rash eventually ended up taking him privately to see Prof Harper from Great Ormond Street. He was really great - DS baths in Balneum Plus, washed with Aqueous then has Diprobase as his emollient, Stiedex for his body for flare ups now and Elidel for his face. DS is now 18 months and it is under control he will ssometimes have the odd flare up.

Oliveoil - we triend the fucidin as well before we were given antibiotics. If you get the antibiotics be sure to take measures against thrush. My DS would also not be classified as a dreadful case as it is mostly patches - the worst on his face - but that is not the way I feel about it when strangers ask whether he has fallen over. On the Peanut Butter I have read that allergies don't show up on the first taste of something but only after a few - so he may well be allergic. How many time had he had PB before?

Gee louli - you must have been really peeved with your GP. My Pedeatrician told me initially that DS's eczema was teething related and in fact a saliva allergy - after 4mths of using the creams she prescribed with only worsening, I took him to a dermatologist.

AussieSim - she has had peanut prob about 10 times, not given to her directly, she pinches my toast, little madam. Also, she loves grapes and normally has black ones but had green ones instead, could the reaction have been for the grapes rather than peanut? Can't see a colour making a difference but you never know.

As I understand it, allergies can develop at any time, even if you've been eating something for years, so it could well be a reaction to peanut. My ds had multiple allergies but didn't neceassarily react every time. It was almost as if it had to build up to a level that caused a reaction.

My ds reacts to green grapes, but not to raisins (which are red grapes?)or red grapes. It might be an idea to put something else on your toast if she pinches it. Allergies can develop at anytime and the more exposed she is the more likely it is.

Thanks folks. The doc said not to give her the peanut butter or grapes for a week to get it out of her system and then test her with one or the other to see what is the problem.

I love Professor Harper!
Now on a regimen of about 100 different things (v similar to you Louli, but on top of all your lot add in oral antibiotics, an antibiotic/antifungal/steroid cream for the face, and a barrier cream for the face before every feed as well!) but confident that all of this will work together well. I'd really advise seeing a dermatologist - GPs are really not good at skins, apart from anything else ezcema treatment progresses very quickly and it is impossible for GPs to keep fully up to date. They just don't have time. Harper explains things really well, makes it very clear what each component of the treatment is for and why you need it. He also tells you that your childs eczema is awful and needs to be dealt with agressively (which is so much better than people saying "oh dear, a bit of ezcema, poor thing, never mind, they grow out of it don't they" and you are thinking "it looks horrible and itches like crap". And he says that he doesn't believe in making ezcema better (ie less bad but still there), he believes in making it go away and not come back.

Such a relief to at last have some well informed treatment to use on him, he is 6 months old and has had ezcema since he was about 3.5 weeks.

i have a small outbreak of ezcema on my arms and can now understand what my dd and other kids are suffering. it burns, itches and feels hot. keep having a little scratch when i know i shouldnt, but have pinched some of dd dermol which is helping a bit.

FYI my dermatologist now has DS on interval therapy for 3 weeks. The Steroid Cream (Elocon)on the weekends and just emollient during the week. Seems to be doing the job nicely.

Princesspeahead, I am really glad your appointment went well with Dr Harper. It seems like a lot of stuff to do at first - even more for you but he really knows his stuff and it is great when the babies get better. Fingers crossed that your son gets over it soon.