Bleeding Eczema - what to do?

[TruthSweet]

DD3 (2.4y) has eczema (and asthma and is mildly hypermobile). She is currently wheat free as there is concerns she is wheat intolerant or wheat allergic. After being wheat free for a week we thought it hadn't made much difference so gave her a hot cross bun and a sandwich to eat over a day (we were told to give her lots of wheat after her wheat free wheat so we could be sure it was a problem) - she screamed until 3am and her lips swelled a few hours after eating the wheat so she looked like Leslie Ash.

Her eczema has been dreadful recently and she is up 6 or 7 times a night screaming for 'cream' as her skin is so itchy. She is currently on Hydromol and compression garments worn 24/7. She has Hydromol applied just before her bath (in swimming the Channel quantities) and that is washed off then reapplied in the same level of coverage. It is reapplied as needed through out the day. I get through a 500g tub a week or less at the moment (I got told by the eczema nurse it should last 2-3 weeks!)

Today she has scratched big patches of skin off under the waist band of her nappy, in between her shoulder blades and her knees and ankles are pretty raw too. Today's compression garments are stained with blood and 'ooze'. She has been screaming for creaming every 10 minutes after bed time and that was after Prition and 10mls of Calpol as well as much cream as we could physically get on her skin.

What the heck do we do now? What is left to try? I don't know much about eczema as although DD1 & DD2 had it, it was resolved with Dermal 500 bath stuff and diprobase!

She is also wheezy tonight but doesn't seem to be developing a cold.

Anyone know what is our next step? We are at a loss and DH and I cannot stand to see her in such pain much longer.

If the eczema is weeping then it's probably infected. She will need antibiotic cream and possibly oral ABs if severe, so would take her to the GP in the morning.

Have you tried different emollients? We had to try loads before finding one that worked for DS1 (Doublebase). You don't mention steroid creams, you need to be using hydrocortisone regularly (daily if needed for as long as it takes).

No advice to offer other than to say you sound as though you would qualify for DLA for her.

Has she been referred to a consultant for allergy testing? Were you advised to cut out wheat or did you decide to do it yourselves? Any exclusion diet should a) only be done under supervision of a dietician and b) they would normally advise to do it strictly for at least three weeks. This would be followed by skin prick or blood tests.

Meg - We have used Diprobase and Doublebase to no effect, we have fucidin cream but I don't think it looks infected yet (normally it is pus-y discharge from the wounds but this is 'just' clear/straw coloured fluid.

She was on a hydrocortisone cream - Eumovate which cleared it up completely but she then had a cold and asthma attack and every single eczema patch she had ever had flared all at once and we haven't got on top of it since.

She would normally have a pattern of eczema flare (just one new small patch would appear to join the others but only on her joints/creases), a cold would start and then she would have an asthma attack - this would be over the course of 1-2 days. However after the Eumovate working we haven't got on top of it and the eczema nurse didn't want us to use it long term due to the skin thinning risks.

Her eczema is now all over her back (worst between shoulder blades and the small of her back), stomach, arms, legs (worst backs of knees and ankles) and a bit of on her face.

She has had skin prick tests and has had a blood test sent off for analysis but we won't get the results back for about a month. The eczema nurse rec. one week off all wheat and then go in with lots and lots of wheat so we knew it was definitely the wheat and not a co-incidence she got better whilst wheat free.

She isn't under a dietician or a allergist but she is under a Paed. for her asthma (was very ill as a baby and had 10 admissions for bronchiolitis in her first year and went from 91st centile to the 2nd).

We have swapped out wheat products for the wheat free alternatives (or I make my own wheat free versions) rather than cutting out that sort of food altogether (e.g. I make chicken nuggets with wheat free breadcrumbs and diced chicken breast and she has wheat free bread/pasta/biscuits/cereals)

zookeeper - I very much doubt we'd get DLA (I don't qualify with epilepsy and DD2 wouldn't have done when she had arthritis!) but it would come in handy with all the extra washing she generates (piles and piles of it!).

what part of the country do you live? can you get reffered to a london hospital allergy clinic?

you have a some chronic problems there, and a pead, without training in immunology is going to find this hard to help you.
I do find the ezcema NURSE advising you one week on and one week of pretty odd. you are also having RAST testing , is this for wheat?, other food or environmental allergies.?
I am fairly sure that ezcema nurses have no training in diet, or immunology with regard to ige food allergy, or intolerence , and exclusion diets etc.
Even if this allergy was an intolerence (and it does sound ige to me btw) a week of and a week on is not the recommended exclusion diet to follow.
normally its removed for weeks, sometimes up to 10 weeks, and then re-introduced.
IF this allergy is IgE related this advice is a serious mistake to give you, as allergic reactions can lead to anaphylaxis. what advice have you been given by the pead on this subject?

If the pead is carrying out RAST tests, and this is for IgE allergies, if this is for wheat, then dont give it AT ALL to your child. In any form.
wheezing, swelling are all signs of IgE allergy, rather than intolerence. asthma caused by food allergy , which is often a major part of anaphylaxis. BTW has milk been ruled out as a cause?

often allergy patients within the nhs get sent to seperate people do deal with the chronic problems atopic people have, these people dont often have any real training in allergy, but have picked up some ideas about allergy due to the rise of the patients walking through their door. How they view the allergy status of a person depends on their understanding of immunology.

you have a child with asthma, ezcema and suspected ige allergies, this needs someone skilled enough to view your child in a holistic way, taking in history of reactions the difficulty in controlling asthma and severe ezcema and its relation to food and environmental allerigies. That doesnt mean alternative people , it means a pead immunologist.

ring the anaphylaxis campaign. get the name of the nearest allergy doc near you and ask to be reffered.
if thats not possible, you need to start reading some good books on allergy , the complete guide to food allergy and intolerence , by proff brostoff, published by gamlin , is very very good and easy to understand.

get the blood test results, ask to be reffered to a dietitian, remove the food from your childs diet.

i wish you all the luck in the world. btw have a multiple allergic child myself. you name it , in our family have scratched it, swollen on it, and wheezed while doing it.

good luck!

eragon - Thank you for the information I didn't know there was such a person as a Paed. Immunologist let alone we could be referred to them. I really don't think anyone is taking this seriously and I am being tolerated a bit (like the testing is a sop to my neurotic blatherings). I keep waiting to be told I am just being a fussy mother and there isn't anything wrong with her, that she is just atopic like her parents and there is nothing to do except cream her.

I have asthma, mild allergies - cucumber and melon set off my asthma and cause headaches and I can't take penicillin based anti-biotics after a recent allergic episode following IV Augmentin where I had to be sedated & hay fever and DH has asthma [very mild], contact allergies (if he touches certain things his hands swell and go blotchy) and hay fever. DH's father is registered disabled due to his extremely severe asthma and has eczema too, plus allergies of one kind or another - not epi-pen allergies though.

We live about 40min from London (Surrey/Sussex borders) so London hospitals are a possiblity. We haven't seen the Paed. yet but will do in April (!) she seems to specialise in asthma/eczema/atopy as well as neonatal medicine.

I only saw the eczema nurse because I was worried about DD3's reaction to wholemeal or the 50/50 kind of bread as she seemed okay on cheap pappy white bread (if she had wholemeal/50/50 bread she would have loose voluminous gritty stools for days with weeping nappy rash - I would wipe her bottom and bits of skin would come away leaving open sores ).

I asked the HV if she had heard of toddlers reacting that way but she hadn't so she suggested getting allergy testing and ask the GP to refer.

I was worried about the wait so rang up the eczema nurse as she had done allergy testing on DD1 when she was about 2y to see if there was an allergen triggering her asthma (luckily now she is nearly 6 she doesn't even get wheezy any more) and she saw DD3 in days rather than months.

DD3 came up negative to the skin prick tests so it was rec. that we do the week off wheat, week on wheat with lots and lots of wheat - not just giving her a biscuit - to see if it was an intolerance (her paternal grandma has had a wheat intolerance but after years of being wheat free she is able to eat small quantities of wheat without side effects - too much and she really suffers!).

I don't think she is allergic to milk as she drinks milk, she is bfing as well but likes a cup of cow's milk and eats cheese, yogurt, fromage frais, butter. She was on an extremely high fat diet after about 7m as her weight gain had completely stalled - so was having a pint or two of double cream a week in her food, plus butter and cheese added to everything possible and her eczema didn't get appreciable worse nor did her bronchiolitis episodes.

Although when she was 6m 3w I was taken to hospital with pancreatitis and couldn't feed her as the pain was so bad so she had formula for the first time. She was ebf to 6m then had one week of food before having yet another bronchiolitis attack and was put back to just bf by a different paed to our usual one so she would recover quicker.

Formula made her poo biohazardous material - thick pasty khaki green, massive poos that stank like nothing I had ever smelt before (I was gagging on the smell) and I only saw her poos when she was having a small bottle of formula a day (I was by then out of hospital and had been able to pump enough in the last few days so that she was mainly BM fed). Apparently she was much much worse when she was mainly formula fed with just a little BM. She wasn't over fed either as the most she would take was 120ml but more usually 90ml (given that was was over 6m and exclusively milk fed it's not any where like the 250ml that she 'should' have been taking).

After this her paed. told me that she can't have formula anymore as it obviously didn't agree with her but didn't think she was allergic just couldn't digest one of the ingredients in formula. So when I had my gall bladder out when DD3 was 9m (back on food by then) she had just BM and food and didn't have the biohazard poos!

Sorry this is such an essay into the inner workings of my family's health problems I just didn't want to leave anything out! I really didn't, did I? Oh yes I did - DD2 has had arthritis and is Hypermobile and so is DD3 to a certain degree!

Went to GP's this morning and GP has prescribed Eumovate, Flucloxacilin and yet more Hydromol as the skin is very infected but she has done a referral to the local Eczema Specialist so hopefully we will get to see her soon.

That's great news re: referral. Don't be afraid to use as much of the strong cream as you need to get the infection and flare-up under control.

Definitely worth applying for the DLA, Truthsweet; glad to hear about the referral anyway.

zoo - I thought you either had to be pretty much at death's door or never going to get better to get DLA not 'just' eczema that apparently isn't that bad. Then again if hers isn't that bad I can see why you could get DLA for it!

Oh God please just apply and see.

I think I might - they can only laugh before the application hits the shredding pile

My DD2 has similar eczema issues (though we haven't gone for allergy testing yet). I would have thought, on the level of eczema your little one has, that she'd be on a stronger emollient than Diprobase and Doublebase. Ask your HCP if she can use something stronger like Epaderm and possible a strong bath emollient as well.

Also scratchsleeves.co.uk. These have made a major difference to my DD as she can shred herself in just a few minutes. During bad flare-ups, she practically lives in them and they drastically cut down on the pain and length of them (though she does get quite frustrated in them at times, it's better than the alternatives!). I hope your little one finds some relief from this soon!

We have tried diprobase/doublebase but they didn't work hence the hydromol which I also use as a bath emollient.

She is a lot better today and only woke to be creamed 4 times last night so she getting better - thankfully for her!

Bless her poor thing....

Take a look at my blog just starting out but putting loads of stuff that helps us deal with allergies and eczema x

www.allergies-eczema-and-children.co.uk/

I know she has milk OP but perhaps this could still be a problem, just as the wheat was? Could you go dairy-free for a week and then reintroduce it and see what happens?