Eczema / sleeplessness / help!

[stressdaddy]

Hi,
Our 10-month old has quite bad eczema that requires weekly steroid/emollient treatment. The rash is barely under control and the itching isn't really at all; if anything the itch is getting worse, especially at night, so we're all losing sleep and slowly going mad.
I was thinking about getting an 'Allerayde' sleep suit (www.alleraydedirect.co.uk/eczema-sleep-suit-babies/AV300.html). These people make some pretty strong claims for their clothing, which is designed to keep the skin cool by letting it breathe properly (something cotton can't readily achieve, as any outdoor clothing expert would attest to).
Has anyone tried Allerayde?
Would be very interested to hear more ,
Thanks!

I've never heard of these suites (will investigate) but my 2yr old has had bad eczema, and I suffer too. Have you tried giving an antihistamine? My DS was prescribed Piriton to help with sleep. You only give 2.5mls, but it was just enough to take the edge off the itching.

*suits. Not suites. Can't type.

Thanks snotsville!
Yes, we do use antihistamines sometimes, albeit reluctantly. They can help, but it seems a bit extreme, for regular use anyway. Although our GP thought the one we were prescribed is ok, the manufacturer says don't use for

Have u been referred to dermatology. Ds1 (age 4) and ds3 (14 mo) are in 4 weeks of day and night bandaging to try and break it. We've done years of epiderm and hydrocortisone to no avail. The bandaging is a major fanny on but it does work.

When you say weekly emollient/steroid how do you mean? When DD1 was a baby we saw a specialist and she encouraged daily creams...now her eczema is much better but we still use daily moisturiser (Aveeno) and daily steroid on flare ups. Twice daily and then for a day or so after it goes down as instructed.

We got given a couple of sleep suits by a lovely MNer which did help when she was really bad aged about 2...worth a try but can you get 2nd hand rather than fork out big time?

You should def push for a referal if you have only seen the GP...good luck. DD is now 7 and much better but still very dry....I can hardly remember those horrible itchy nights .

I agree with laundry lover re the referral. I was at gp with ds1 for 4 years on regular basis before got a referral. I took ds3 to the dermatology appointment as he was surgically attached at the time and they took one look at him and gave me a bag of stuff for him and sent me back to gp for a referral. First gp refused to refer him despite dermatologists request so tried another gp in the practice. I think they thought cos he was a baby it would clear but ds3 was much worse than ds1 at the same age. Make a pain if yourself at the gp. You may end up in bandages like us (4 weeks day and night for both of them) but it really does help - especially with night itching. If u get any yellowness under the skin that's infection and you'll need a special cream for that - watch out for that as I didn't spot it for years.

Hi Lollystix
We got so desperate that we paid to see a consultant privately, but in the end our referral for our local dermatology department came through. Their prescription was essentially the same as the private consultant - basically stronger steroids than hydrocortisone (eumovate for his body, and trimovate for his face/head), with a regular (3* daily) application of an emollient. We use something called cetraben as our emolient, also on their advice, plus Hydromol as a bath additive. We've also used epiderm, but the advice from our consultant was that epiderm is too heavy for all-over use - and that certainly fitted with what we'd seen, as it sometimes seemed to make things worse. But I'm sure every child/case is different.
One lesson I took from this is not to trust what GPs say about eczema. I'm sure there are plenty of very good ones, but we spoke to 3 (or 4?) who all gave different prescriptions, all of which were at odds with what the consultants told us.
We were also prescribed tubifast (think that's what they're called) garments - same idea as bandaging, I suppose, but they're stretchy and are worn at night to help the emolients sink in ...
Good luck though, Lollystix, I hope you get some relief soon.

Ps - sorry if stating the obvious but make sure your babys nails are cut AND filed to take off any sharp edges. Keep baths cool and get some dermol 600 for the water and wash at 60 degrees. Also anti allergy mattress protector and regular sheet changing to minimise dust mites.

Thanks, again, Lollystix, we seem to be writing at the same time.
Sorry you had such an awful time getting your referral. We had to wait about 4 months, and did have to badger the GP, but to be fair to them they did refer us without being difficult. The way you were treated sounds dreadful. Not referring you because your ds was a baby is purely idiotic.
Best wishes,
sd

Hi laundrylover,
Thanks for your advice. Yes, we have a fairly strict regime to follow from our consultant - 3 times daily emollient (cetraben), daily baths with Hydromol (another emollient) and twice weekly application of two steroids (trimovate and eumovate); the steroids were going on every day, but on the consultant's advice we've dropped that down to weekends now.
Our problem is that the itch doesn't really go away, at least not for more than a few days, so a sleep-suit would be great if it helped get him through the nights, which are his worst times. The company I mentioned, Allerayde, sound good, but they make very strong claims based on a clinical study in Germany, which, they say, was halted because their garments worked so much better than cotton that it would have been unethical to continue the study. I have some understanding of clinical trial design, and this sounds odd to me.
Anyway, glad to hear you got over the worst in the end. We'll keep looking/trying things out.
Best wishes,
sd

Hi stressdaddy - agree with u about the epiderm (I think it makes ds3 flare up) and also gps to be honest - dermatologists were slating them a bit too. We are on diprobase ointment followed by eumovate like u and then we have to apply ichthammol paste followed by ichtopaste bandage secured with gauze bandage and then tubifast on that and then the comifast or tubifast suits. It's a total carry on and a nightmare getting the stuff off the gp but it works. But then it feels like a few weeks later were back to square 1. Dermatology says this session of bandages should clear it for ds1 as he's hitting 5. Ds 2 escaped but I think he has hay fever developing and cooking up ds4 just now and already starting to worry if he'll be an ezcema baby too.

lollystix, that's all good advice!
I'm thinking about mites now. I really didn't think it would be an issue, because we bought a new, good quality mattress, but it's still a possibility (mites are very mobile creatures, after all, and the cot sits on a carpet that isn't new).
thx

I'll keep my fingers crossed for you, lollystix!

Hi all
My daughter has had mild to moderate ezcema since she was 3 months, we've tried several different emollients including eparderm, doublebase and diprobase. We've gotten on well with eparderm and also using eumovate and hydrocortisone steroid creams.

We recently saw a dermatologist who prescribed Comfifast suits (tights and vest for 6-24 months) and we've been wet wrapping her with this at night and have seen a big difference, she was covered in patches all over her body but these have gradually disappeared.

We've also benefitted hugely from an Ezcema workshop run by Guys and St Thomas hospital in London that really empowers parents and teaches them how to cope with itching, applying steroids etc.

Its run by a lovely lady called Ruth Bell, who has had ezcema herself and is almost evangelical in helping parents of sufferers. Anyone who lives in London can go to these workshops regardless of boroughs, although I think they are mostly based in south London. You just have to ask your GP or health visitor to refer you. Ruth also makes herself available on the phone to anyone who has any questions etc...

Attending these two workshops have really helped us get on top of our daughter's ezcema to the point where she doesn't really itch anymore. It take time and dedication but can be achieved and most babies grow out of it AFAIK.

Please PM me if you would like any more details etc.

Sympathies. It is horrible seeing them scratch themselves raw. :(

DS (21m) has been referred to a specialist, but in the meantime we've just been prescribed some tubigrip things. We just slather him in doublebass - not rubbing it in, so quite a thick layer) and then cover his arms and legs with the bandages. It's already making a difference.

The dr said it may be an allergy so when the worst has cleared we will do a food diary.

We also give him an antihistamine at night - this is controversial so don't do it unless the dr tells you to.

Thanks, Iloveredvelvetcake and WeirdAchronymNotKnown (amazing names, btw).
I might see if we have a local support group of some kind - sounds like that can be enormously helpful.
The other thing might be the bandage/tubifast stuff. We used it initially, but stopped as the rash died down (maybe we should be sticking with it to deal with some of the itching).
The sleep-suits I originally mentioned are just designed to replace cotton babygrows, to make them more comfortable (the fabric is meant to be extremely breathable and cool). I don't know. Might give that a try too.
Anyway, thanks folks, and good luck!

Yes I'm not sure how long you're supposed to keep using the tubifast stuff. Just took the bandages off DS after his second night, and the difference is amazing! Still dry, but not as flaky, red or inflamed.

I'm not sure if we'd keep doing it after it properly goes - is there a risk of 'overmoisturising'? Maybe you could just do it once every few days when it's not there, just to give the skin a boost or something? I don't know. Will ask at the consultant's.

I'm actually kind of hoping it is a food allergy like the Dr reckons, because at least then the eczema will go away once we eliminate the trigger. I'd hate to think of him always battling it, poor boy :( I'm going to get a cheap page-a-day diary so we can start recording what he's eating - I suspect it might be wheat or dairy related but obviously it's not advisable to cut out food groups without decent advice.

Hi WeirdAcronymNotKnown, apologies, only just saw your reply.

I don't think you can over moisturize, really - at least not from what we've read or been advised. And I think the general wisdom is that it's best to keep applying it quite heavily even when there is no rash, to preempt and stop it coming back (dry skin is more prone to inflammatory responses, I think).

I agree about food allergy. Our consultant didn't seem very interested in the idea. The problem is, a chief food allergen may be dairy-related - and of course the only way to exclude that would be to stop using formula milk (which is dairy based). That's obviously quite difficult!

Best,
SD

My son has gone through a lot of what your DS has. We even went private too. He's now 17months and it's mostly gone (does flare up every now and then). He's only on Hydromol and the odd hydrocortisone 1% for flare ups. It's a long road, just wanted to hold hands and say it'll be easier as he gets older but hope it gets more manageable soon

One thing that helps my DS whenever he does have a desperately itchy flare up (usually around his cheeks when teething or after eating, or arms/legs when tired), I usually always dampen a cotton cloth/muslin with cool (sometimes cold) water and pat down the hot/red/itchy areas. The cooling effect really does work for my son, have you tried it? Works for some, not for others, but just wanted to share. It's usually at night, we just lay there together and I cuddle him and pat his itchy spots. If the cloth gets too warm it doesn't work, so I usually have a little bucket nearby to rinse the cloth. I don't apply any cream if he is actively itching an area, I find it makes it worse for him.

There was a period, definitely waaay before he turned one, when I had to give him some piriton just for him to get to sleep 😔. My doctor reassured me it was okay, and at least he would have +4 hours reprieve. I only ever used it at night and only one dose. It helped him fall asleep, and if he did wake itchy (after the piriton had left his system), it was easier for him to fall asleep the second time.

My apologies if my post isn't relevant, I just wanted to share my experience. It's not nice watching them itch

Haha, old thread!