Eczema...advice sought plse!

[marz]

I have 2 dd's with eczema, dd2 is currently only under control??!! with hydrocortisone and diprobase while we wait for referral to Royal Free, (where dd1 is , who has Protopic)
Questions....
How do I get the diprobase ointment out of dd2's clothes? I use Persil non bio and even on 60 degrees it is still everywhere. Have tried soda crystals and 60 deg. which works better but still not completely non greasy.....also are soda crystals safe for her already bad skin??
Then....can anyone please explain wet wraps....this is probably the only thing we never tried (or were offered) for dd1 so I wonder if it is worth a try for dd2 (5 months)..thing os, her eczema is all over body...can I wrap her whole body??!! ( Just want to be more informed when I get to hospital appt...and then can ask for what I want instead of being soley in their rather incapable hands.....am consideing asking for referral to GOS ...have just joined NES too....my eczema on my hands is so bad now...(due to stress...it got really bad with dd1 until we got her under some sort of control.
Sorry for the ramble...I am just pretty desperate and fed up and so so tired too...need some sympathy too I guess!
thanks in advance......

Marz, my son suffered from severe eczema, virtually top to bottom of his body. It was very stressful for all of us.
We were referred to the Royal Free hospital. Although it is a very busy clinic, I found the medical and nursing staff to be very helpful. The nurse showed us how to apply the wet wraps and explained the reasons for it. Initially, my son needed steroid creams to get over the acute flare up. He also needed oral antibiotics because his eczema was infected. The 'wet wraps' regime was abit of a faff but I could see the improvement within a week to ten days. I had to continue for several weeks, wrapping morning and evening after baths. As his skin improved I used to wet wrap him with diprobase only. He found this really comfortable at night.
I have to say that I never thought that his skin would improve. His first few years of life were dreadful. We are very fortunate, he is seven now and has been free of eczema for over three years.
I hope you find the wet wraps helps your little one.

Just wanted to offer my sympathies really - I had pretty bad eczema as a child, and was admitted to hospital for a week on one occasion when it got infected. Now it is very much under control - still there, but doesn't affect my life too much.

Wet-wrapping is supposed to be brilliant - though it didn't really exist when I was young, so I can't offer any particular tips. The NES is fantastic and their helpline is great - they can send you information packs on all sorts of stuff. If you're not happy with the consultant you see at the Royal Free, keep asking until you get to see someone who knows their stuff.

I too use diprobase and aqeuous cream (plus steroids) and it is a problem with clothes. I haven't found any great solution - it shows up worse with some colours (dark colours, I find) than others, so I try to wear light cotton fabrics next to the skin.

Sympathies on the eczema on your hands too - I've had this problem since dd arrived (now 17 months), I think in my case because of all the extra hand-washing involved with a baby, which dries the skin. I've positioned moisturisers at every sink plus use it as a good excuse to get dp doing nappy changes and baths!

hi ther marz, my sympathies too. Our daughter who is 2 developed bad aczema at 3 or 4 months and we tried everything under the sun, including steroid creams which made it disappear for a day or two but only to return. Then we were shown how to wet wrap at a private appointment at Great Ormond street hospital - we had to pay ( expensive, but the best 300 odd pounds we ever spent).And her eczema went after about a week, never to return except in little manageable patches which are really not too much of a problem at all. That was a year and a half ago. The wet wraps are very thin, stretchy bandage tubes which you wet then pull onto the limbs/trunk over a chosen cream - steriod or emollient depending on what you are advised. It really is comfortable and although it is a hassle to do, is worth it in my opinion. wet wraps worked for us and we have never looked back. My sypathies, I know how awful it can be to have a child , let alone 2 kids, with this debilitating condition.Good luck. Also, we got all the wet wrap stuff on prescription as it;s pretty expensive, nag the GP.

Thanks for the messages...dh is now bathing dd1 as my hands are raw...can't wet them and they are splitting even with gloves on.
I have made resolutions....like demanding to see only the consultant at an appt and not some resident who knows virtually nothing including not giving full info on using Protopic and vaccinations etc...
I am having a very very itchy day too......so is dd2...she has been fidgety and irritable all day......is there something peculiar about today for all eczema sufferers??!!

As for the wet wraps.....thankyou for the info, donnie, infact, is there some way I can do it without bandages for my hands...or rather a makeshift way, I have heard of using cling film....or gloves...I am just desperate tonight...

have u got cotton gloves handy for now?

u could put a layer of emoillant on your hands, and then pop on some gloves overnight. might work.

dd1 was wrapped with clingfilm over efcortalan (sp?) which worked pretty well.

there are also new wet wraps garments now available on perscription, which is a lot less fiddly than the bandages. we are gonna try and get them for dd1 at her next appointment.

Marz, I second Donnie. Get an appointment at GOS with Dr Atherton if you have no joy at the Royal Free. Dr Atherton has a book "Eczema in childhood", our local library has about 4 copies, it's worth a read.

There is a website here which will give you more info on wrapping.

Back to Dr Atherton, we had no joy with wet wraps and the good Doctor precribed oral steroid pills -Prednisolone. Ds was on them for a year (they worked within days clearing his eczema but the weaning off process needs to be very slow). Since then his skin has never deteriorated into badly eczematous skin. I think this drug is reserved for the very worst cases, our local dermatologist has never prescribed it to a child in years. For us it was a case of desperate times calling for desperate measures. Our son was like a walking wound and had absolutely no joy in his life, only pain. I dodnt know how badly your dd is suffering. Hopefully not as badly as ds was. The point I wanted to make is that there are other medicines available, you just have to keep trying them out till one works. Good luck.

Good luck - we have done everything except wet wrapping in our time! We went to see Prof Harper at GOSH with dd who had severe infected ezcema over 85% of her body (she was 4 at the time). He was fantastic - very frank, very matter of fact, gave us a full regime of protopic, hydrocort, emolliant, baths, and a sedative at night to stop itching (plus full clear and understandable explanation why each of these was necessary) and she was unrecognisably better within 4 weeks and has NEVER been worse than a bit itchy occasionally since. He was great. Taking ds2 to see him next!

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Thankyou all.....
I have decided to put fucidin on my hands ...(thinking about it....which I have not been...properly, in my daze of tiredness....I think it was infected, which is why it is so so bad.) Looks better this morning, but still intensely itchy!
AS for Dr's Atherton and Harper, I am wondering if we went private, do you then HAVE to pay for the prescriptions or could I take their medical advice back to GP to prescribe? I just feel "scared" about the price...
dd2 is ....well....not extremely bad, I guess, it is under control with hydrocortisone EVERY day, as soon as you miss one dose, she goes all red over all her body within a few hours....and becomes very itchy....is that bad or not??
I think that it is hard to get it into perspective....as that for me is really bad, but then I understand that some are sore even with creams. I am concerned though that I know the pattern is that she will become more immune to the hydrocort. and we will have to use stronger, but ontop of that I don't like that she has to use it every day constantly. I mean, is that a solution?! My GP seems to think it is.
I am hesitant with the GOS consultants as I am so scared of oral steroids and their side effects...and if they were to suggest this....well..I don't know, I guess I want to exhaust every other possibility first. dd2 is only 5 months....after all.
Am going in search of the book, thanks bunny2...
I just wonder sometimes what is happening to mankind for our bodies to react to life in such painful and irritating ways....I desperately need to get past this despair and get positive again.

harper gave me initial private prescription (gulp - £150 or so I seem to remember) but wrote a letter to GP saying this is the treatment, please could you prescribe further if necessary. however he knew we weren't short of a bob or two (and anyway health insurance was covering it) and if money was an issue he may well have just got the GP to prescribe. I'm sure whoever you go to's secretary will talk this through with you on the phone in advance if you are concerned.

Marz, just found my "Coping with Eczema" booklet by John Harper at GOS. He's a nice guy, very helpful and has summed up all his recommendations in this booklet. If you send me your address (send it to me at goochersmom at yahoo dot com), I'll pop it in the mail for you.

(Back to my clean-out... it was hidden at the bottom of a bag of miscellaneous stuff.)

Oops, just rereading, it's the same Harper as PPH.

Marz, my ds1 suffered with horrible eczema as a baby and it caused me no end of sleepless nights and stressed out days with the worry. Luckily it is very mild now but I still stress when he has an 'outbreak' so I really spmpathise. I suffered terrible eczema on my hands and feet after I stopped breastfeeding ds2 and ds2 and I too could not bath them as it made it worse. In the end i went to the Dr after previously self prescibing myself hydrocortisone ointment, and he decided the eczema was infected with a fungal infection and that was why it was so itchy and throbbing and not clearing up with hydrocortisone. I had to use a cream similiar to canistan (sp?) - actually it was canistan but with hydrocortisone in it aswell. It did the job but I had suffered for months and a patch of eczema on my face had got fungal infected as well through my touching it with infected hands! Hope you DD's improve soon. Eczema really is so stressfull for all concerned

Marz, I second what princesspeahead said - Dr Atherton was excellent about writing immediately to our GP and asking him to make all the bandages and creams available on prescription as they cost and also have to be ordered in sometimes as they are not an everyday medecine.You can be referred by your local hospital as a last resort to GOS but if you can possibly afford to go private then Dr Atherton ( who was fab, can't praise him enough) was able to see us within about 3 weeks of our GP writing to him.It is expensive but I think perhaps they are able to stagger the payments for less well off people.Good luck, it's clear from this thread that there are people who know what you are going through. I used to spend hours on the internet and I tried every 'miracle'cream around including the M-Folia stuff which cost around 100 pounds per month and was useless, so I figured paying for GOS was actually better value in the long term!maybe you should urge your GP to refer you to a GOS paediatric dermatologist.

Marz, here is my experience of Dr Atherton. We were referred on the NHS but couldnt wait (6 month waiting list) so arranged a private appointnemt (you still need a referral for private). We saw him 2 weeks later. He prescribed the prednisolone and offered to write to our gp requesting the gp prescibe them on the NHS. This process would have taken several weeks and we were so desperate that we chose to get an immediate private prescription from Dr A instead. The appointment was over £200 I think, and a follow-up appointmnet around £100, the medicines were about £150. It adds up to hell of alot of money so it is a big decision to make.

Ok...I spoke to NES today and they gave me the kick up the - to go to GP for my hands....who prescribed Fucibet, after a lecture about not self prescribing! They also suggested using lotion on my hands instead of ointment as it is not allowing it to breathe. It is still burning and stinging and itching alot...and arter reading what you said, QZmum, I now self diagnose that probably it is maybe the same as yours....so I now think maybe I should have got fungal cream instead?!!!!
I also read on the leaflet that it can burn (steroid) after long term use....so maybe this is why mine burns? GP was very vague about wet wrapping...I asked and he told me he did not know...but I shall go back anyway next week if it has not stopped hurting/itching.
I feel alot better tonight though. Just not so alone in this minefield and I think I will talk to dh about private referral, I know one of the GP's at my practise who will refer for me, and I still have dh's med insurance book sitting infront of me waiting to be read to see if dd is covered.
As for dd2, she has spent day looking itchy, and tonight I am wondering if the hydrocort. is burning her....she grumbles a lot when I am creaming her, so now I am getting desperate for that referral to come through. Looks like I should really work out going private.
dd2....well, we had to toss up between taking "bear" and two dolls to GP today as they all have 'flaky old skin' and she wanted to show them all to the Dr to get a "pissciption"... my poor babe, alll her toys and dolls have exzema too!!! Thankfully they take her seriously and always take time to look at the dolls!
Thankyou for everyones info and support, I feel like I have got back into action instead of feeling so helpless and down with this whole thing.
JJ, I have posted my address to you.....
thankyou again!

marz, what creams are u using on your dd2? some are known to cause a burn (not just the steroid creams either). dd1 was perscribed E45 for ages, but then she started screaming when it was put on and her skin got worse, so we moved onto other treatments.

dd1 see's a specialist at hertford hospital, who is great, and always takes time to listen and put our minds at rest. tho it6 took months of me fighting the gp's to get a referral for her. (she devoloped eczema at birth and was seen by him when she was around 18months old.

between the age of 12-18months her ezcema spiralled out of control. she was a walking weeping mess. i was at the gp's every week, getting creams,oral steroids, anti biotics. it weas a nightmare. but s soon as she saw her specialist, he confirmed she had 2 types of ezcema (one linked to migraines which come from my side of the family, i was stunned by this, didnt catch the name and to this date dont have a clue what he was on about really) and atopic ezcema. he perscribed dermol 500, oilatum plus and a few other creams to try. and she hasnt never had a outbreak as bad as she did that summer.

Hi again, Marz most creams sting ds when his skin is inflamed. Aqueous cream, diprobase cream, Aveeno cream, steroid creams all made him cry so we swapped to ointment versions - diprobase ointment is very good, steriods always come in both cream and ointment form. I am not sure why but it is common to find creams burn/sting/irritate already sore skin so maybe you should try the oinmentws instead.

one more thing before I hit the sack, have you tried altering your bathing routine? We were advised it is best to bath children with eczema once or even twice a day. This is because the skin is kept soft and the emmollients can be well absorbed. However, we found that cutting bathing back to twice a week helps keep ds' eczema under control. In the bath he always has a really good scratch, the water really seemed to irritate his skin. Now we only do it every few days his skin is altogether calmer.

Marz, I haven't received your address and might have accidentally deleted it (doh!). Could you resend it?

I second what the others have said about creams vs ointments. Also with the bathing more frequently. My son's doctor said to think of it as a treatment and to use a suitable bath oil in the water and aqueous cream (if it doesn't sting) to cleanse. Also, don't contaminate the cream or the oil -- use a clean spoon to dip it out, don't scoop it out with your hand. Everything about the bath should be very clean; the cloths should be freshly hot washed, the towels also and the bath scrubbed clean and rinsed extremely well before use. (I'm paraphrasing the book.)

Sorry if I'm repeating everyone else too much!

hi Marz, really glad you are feeling a bit less desolate - I well recall that feeling, believe me.Iwould push for a referral to gt Ormond st if poss.The money is an issue of course, but we did find wet wraps excellent.Let us kknow how you get on.

Hi all....spent all morning at Royal Free ..arguing with consultant about allergies + MMR, oh.... I could scream....(dd1 got peanut reaction the week after MMR) and consultant telling me that they change rotations every year and so I cannot expect consistant care or to see same Dr at each appt???!!!
Anyway....dd1 is on diprobase ointment and hydro. cream....I was using her ointment on my hands too, but I have started using e45 lotion on hands, (lotion is better for weepy skin apparently. So, now I should try and get hydrocort. ointment? My GP is gonna love me!!! am going for 3rd time this week tonight, (dd1 has conjunctivitis I think!)
JJ...my typo error....your email came back to me, but I have just resent. Sorry!
I am currently bathing dd2 about twice a week, as she was screeching when I put her in, (even covered in ointment)and she is creamed in ointment every 2-3 hrs....I make sure she is clean...ie no leaky milk on her skin etc..and find the daily bath is fine in theory but not fun for her (and as a side thing, saves me so much work on cleaning the grease from everything!
What a week! Feel like this has become my agony page! To top it all off this week....my switch card got stolen and have had the bank/police/fraud team to deal with too....it's not raining....it is pouring very heavily!!!

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Robinw...
We were at the allergy clinic yesterday at the Royal Free for dd1.
dd1 has had allergy tests but dd2 is only 5months old and is not even weaned yet. She has only just got the referral for dermatology at RFree for 21Jan.
I understand about rotations...but my classsic example is from yesterday about inconsistency. The resident we saw said no more nut challenges/tests until she is around 5. (So, as the throry goes, her body is not having to respond and is more likely to outgrow the allergy.) Then consultant said "we need to run more tests, and maybe retest for peanut." This is what I mean. I understand that there are different theories but I feel that under a consultant they should have a standard procedure to follow...especially with something like a nut allergy.
Anyway..we are looking into a private referral now to GOS.....looks like we may be covered under dh's med insurance...yipppeee!!!