Eczema support thread

[AnAirOfHope]

For all things eczema related.

Hi i would like a support thread for eczema as my dd had mild eczema from 5 weeks old and she is now 20 weeks old and i feel we are only just starting on our journey to control and live with this condition.

We are currently using Diprobase ointment emollient about 5 times a day and Modrasone cream 0.05 Alclometasone twice a day for 4 weeks. All this has not touched it and its still red head to toe.

I have washed all clothes in fairy non bio, only cotton clothes and bedding, snuggle paw sleep suits and i'm bf her.

I also have allergies and hayfever and dyslexia.

i would like to hear other peoples experiance and what has help.

Thanks

AnAir - have you heard of 'Scratch Sleeves'? I didn't use them 'cos my DD was a bit older than yours when the worst of our itching started but I have heard others who swear by them - they have a website.

It seems like a lot of us have been fobbed off by the GP's - 'making a big deal out of nothing' perhaps they would like to live with the feeling of small insects crawling in their skin and broken sleep for years and see how they like it. I think they receive v little training in skin conditions. So poor infact very few of them even know to prescibe 'ointment' rather than 'cream' for the steroids and as they are the first line of defence that is pretty shoddy.

Anyway today is the start of another week so 'keep creaming and carry on'!

Re eczema 'just happening', while not all childhood eczema is allergen triggered, some is and, according to NICE guidelines - pdf summary linked allergy should be considered e.g. where children have difficult to control eczema. The guidelines also suggest when a referral is indicated - link to full version here .

ClaireOB - thanks for those links.

From the first one it is clear DD3 has not been treated sufficiently for her whole life - she has large areas of 'tea' staining (alteration to pigmentation) esp. behind her knees, she has areas 2-3" across or larger that are actively covered in sores, she bleeds frequently and wakes multiple times in the night, she has had failure to thrive (yet no-one dared say it - was 8lb 10oz at birth yet only 12lb 9 1/2oz at 21w - as her Paed. was 'happy' with her weight gain and put it down to frequent bouts of bronchiolitis but prob related to wheat allergy too), she gets infected eczema regularly (and strangely enough DD1 has had 4 bouts of cellulitis in a year - which is caused by staph. infections!).

I just don't know where to start with what to do. In a month's time DD3 has an appt with the dermatology specialist nurse in the adult derm. clinic (not 'just' the eczema nurse in the children's ward) - do I hang on until then or see the GP and ask for a 2nd opinion?

TruthSweet, given that it sounds like you're dealing with asthma, eczema and possibly food allergy (the wheat), I think it would be reasonable to ask if DD3 could be referred to a specialist paediatric allergy clinic. Having said that, I'm afraid it is the case that there are still not that many of these in the NHS, so waiting lists can be long, which is probably why (IMO) many children with complex allergy (asthma, eczema, hayfever, food allergy in some kind of combination) are treated by GPs, general paediatricians or adult dermatologists when they could benefit more from more specialised, less fragmented care. It might be worth contacting e.g. Allergy UK or the Anaphylaxis Campaign to ask about specialist paediatric allergy services in your area. If you are in SE England (or able to travel), the paediatric allergy service at the Evelina has a very good reputation.

Apparently the wheat allergy is mild (got quoted 0.75 but not given context/scale after a blood test). It doesn't seem mild to me (though not anaphylaxis she has had lips swell) as her eczema is horrific after she eats steals wheat. She also has asthma (clenil & salbutamol) and there is a very strong family history of atopy....

I have asthma (on salbutamol & seretide but not really controlled), hayfever and allergies (no eczema but I do have psoriasis), DH has asthma & hayfever, DD1 had/has asthma, eczema and allergies (had arthritic urticaria following thrush treatment amongst other non-ana reactions), DD2 has had night coughing which cleared following becotide/salbutamol treatment and FIL has brittle asthma, hayfever, allergies, eczema....

We are in the SE (near a London airport that's not in London) but they don't seem to refer to London if at all possible (even DD2's JIA was dealt with at local acute trust!!). Apparently there is a paed. derm clinic in the acute trust but I can't seem to get near it as DD3 has been under a paed. since she was about 3m due to repeat bronchiolitis so obviously doesn't need to see anyone else (paed is good but can be abrupt).

TruthSweet reading that was strange as its just like my dd.

Brith weight 8lb 9oz 21 weeks this week and is 12lb 2oz (on our bathroom scales she will be weight by HV on Thursday). At 5 weeks old she was hospitalised for bronchiolities and had it two more times but not hospitilesed with it. At 5 weeks she got a rach and i thought it was just a virial rash but it turned into ezcema. It started on her chest the spread to face, arms, legs and back. At 16 weeks i had prawncreakers and within 6 hours she was red head to teo and looked like she had been burnt. I took her the walking centre because of her breathing but her blood oxygen was 96% but was given ontment and the went to gp for sterods as he onlt give me mostruers and trush cream before that. i would bath her once aweek and i would spend the next 6 days trying to calm the red patches down and then bath her and start allover again until we got the bath oil.

I have asthma and on 125 purple inhaler and the blue one. i have allages to animal hair, hayfever, dust mites and melon/watermelon. so does most my family. i have two dn from two sisters and both have milk protin allagies so i'm worried about hope bing allergic to dairy and i'm scared to give her ff

Truthsweet that's a pity you can't seem to access the specialist paediatric dermatology service at your trust, as it sounds like DD3's eczema is having a big impact on quality of life for her and you and DH. Have you been given a reason? My DD sees a lovely paediatric dermatologist (not eczema but a fairly rare autoimmune skin condition) and last time we saw her, she was saying how much badly managed eczema she sees and how sad she finds it that families have struggled for months or years when an earlier referral might have made life so much easier and better for these poor kids. I would persevere with requests for a specialist referral, to paediatric allergy or failing that, dermatology as it sounds like there is room for improvement.

AnAir - We are twins You are the only other person than me I have ever met who has an allergy to melon/watermelon!! Do you also react to cucumber? All three make me wheeze terribly. I also have allergies to some cats, some dogs, natural gas, freshly cut grass and a few other obscure things . DD1 gave me hayfever (I only developed hay fever at 25 when pg with DD1) I can't take anti-histamines due to the risk of CNS depression when mixed with my anti-epileptics so I just have to put up with it.

DD3 had bronch. 10 times in her first year and was hospitalised each time (first was RSV, then every time she got a cold she just couldn't breathe - 2nd & 3rd time she was tube fed and had to be suctioned all the time, needed a head box, ox in the 80s with HB 170+ etc - not fun!). She 'outgrew' bronch and then had viral induced wheeze with every cold instead, now it's an asthma attack with each cold (though the new drug Flixotide seems to control it pretty well).

Her weight is better now - 12.8kg/~28lb but it took an intensive feeding up programme of 600-1200ml of double cream a week in her food plus butter, cheese, Greek yoghurt at every opportunity, plus 8 or more bfs on top of the 3 meals and snacks before she actually gained any weigh. Even then it didn't make the kind of difference you would think doubling/tripling the calorie intake would do .

She had to have formula when she was 28w due to me being in hospital with pancreatitis (I was able to pump a bit, a friend pumped a bit and she was allowed in for up to 2 feeds a day but there was a shortfall to be made up [no solids as per hospital paed due to a bout of bronch the week before to allow her to recover]). It did not agree with her - foul smelling (biohazard standard not just a bit stinky), profuse, khaki green paste like poos - paed said no more formula as it obviously didn't suit her digestion. She managed with out it when I had my gall bladder out 3m later so her not being able to have it wasn't the end of the world .

Claire - It just seems to be assumed that her current paed can/will handle everything (she is very good - top paed in local hospital & acute trust) plus as all of mine are/have been breastfed and this paed is very pro-bfing it seems to be considered the best fit (other paeds have got explanations on how natural term weaning works or sobbing fits from me [I had PND-OCD with all 3] when stopping bfing to treat give gaviscon easier reflux etc has been suggested depending on my MH).

Also, no one seems to think her eczema is bad and it's just dry skin it really isn't just dry skin/eczema as I know what that is like from DD1/DD2 this is different (DD1 & 2's was just confined to creases/backs or in DD1's case anywhere shampoo/bubble bath touched!). GHopefully I will have uploaded pics on my profile in a few so you can see what it looks like (the pics in question are during an infection but her skin still looks similar it's just not running with pus now!)

Uploaded pics now!

Amazing to hear other people's experiences with GP's on this subject. Both of our DD's had very bad eczema and we were told that they would "grow out of it"...not much comfort when they are babies and you are all going through hell .

After yrs of going to & fro to GP, Hospital Derm Dept etc my best advice to you is:
Bathe just 2-3 times per week in warm water with Oilatum (use Oilatum plus if skin is broken/infected).

Pat dry with soft towel (don't rub).

Apply steroid cream (yes after being very anti at first, I realised that I was stressing too much over this). Let it sink in then...
Apply LOTS of emollient (we found Epaderm was best but I think it depends...I also think you should rotate them once in a while).
Invest in a few mitten/enclosed feet sleepsuits from 'Cotton Comfort' (or similar). A previous poster stated that the compression suits supplied by the NHS are not cotton but polyester! That is true and of course Polyester is bound to be hot...which leads to itch...
We found the suits a Godsend. They are expensive but they are worth it. At least you and more importantly, your child, gets some sleep.

We also bought the cotton gloves for when we were out and about and the itch started. Invaluable.

One DD "grew out of it" at 5, the other at 7 (though still has spells of it).
All the best.

I had ezcema from very young age, my mum said i got dryer skin a couple of days after birth and so on.
spent my childhood with strong steriods on my legs and arms, no moisterisers and nylon sheets on bedding!

eczema on body cleared up during teens , apart from severe hand eczema, 30s had one big flare up and have always had 'christmas' ezcema. so defo linked to stress big time.

am currently well dry and flakey and itchy on legs and arms again in mid 40s.

out of my 4 kids 3 have had ezcema , eldest very mild, with hay fever.
3rd allergic kid, days after birth pretty nasty, with very disturbed sleep, and as sleep is linked to growth with babies , weight gain was slow to pathetic at times!
big ezcema care routine, didnt have a great deal of impact. until link to food discovered, skin improved after i stopped breastfeeding him at 15 months.
But , infections stepped in, chest, ear, skin , chest, ear, skin and so on.

after allergy clinic referal confirmed allergies to peanut, eggs, dustmite , tree pollen , cat and dog.

dustmite covers on cot made HUGE difference, was able to go into a deep sleep for longer periods of time. other extreme dust mite control helped as well.
dustmite allergy so severe that facial swelling/body hives in morning would happen if i left this room undusted for a while or didnt boil wash his sheets.

has been on daily antihistamine to control this , and with a addition of a dust mite and pollen filter in room, rhinitus has been better controlled.

skin stopped needing steriods at 5, and he is just very very dry and needs to keep up with moisterising, so ezcema is now mild.

however skin , ezcema wise flares up a couple of hours after food reactions.

currently has all enviromental allergies,and a few food.

child 4 , mild ezcema, with hives to some shampoos etc. which gradually got better as time went on.
however now currently 13 and eczema flares and hives from enviromental causes, such as sitting on grass. and now, suspected food allergies and later on skin flare up.

hubby has adult onset asthma and sensitive skin, with enviromental allergies and hives from that with just dry skin. without the ezcema burn iyswim!

hello everybody... thanks for putting this thread up... it's really interesting to read about it from different perspectives.... especially those of you who are adult sufferers....My girls aged 6and 7 have both had eczema, and as i never did, i found it really hard to start with. there was so much to learn about it. and i am still learning. My 7 year old grew out of moderate eczema at 3, and my 6 yr old still has controlled severe eczema. I have found the eczema nurses really helpful, and would recommend them, as they help you to work out exactly how you are goin to apply the treatment regime. I hope those of you who are in the most awful stages gain some comfort in knowing that children can grow out of it, and even if they don't as time goes by we often learn how to better control it so that it is not as miserable.

a few questions.... anybody know about stunted growth? my child eats really well from all food groups but is really small for her age.... any information about long term prognosis? is she always going to be skinny and tiny?

also anyone have any experience of herpetic eczema? if it goes without treatment does it recur? GP dismissed it is that's just normal for eczema.

and any ideas what discoid or follicular patterns means? (off claireOB's link.)

thanks

Has anyone else used wet wraps?

Our doctor prescribed them for my DS and it made an amazing difference. No chemical, no nasties just locking moisture against the skin.

It helped him get a good night sleep, which in turn improved the eczema.

Probably not right for everyone, but made a big difference to us.

twonker The Eczema Society have info on herpetic eczema here. They also have a helpline, worth contacting if you're e.g. wondering about referrals, and a useful list of fact sheets. Discoid eczema has circular lesions, and follicular eczema occurs around the hair follicles. The full NICE guideline goes into lots of detail about types of eczema, diagnosis, treatment and complications - long pdf!

Hmm - I was always told that circular eczema was the norm not a different kind of eczema. DD1 has been eczema free for ages (prob 2y) but yesterday she was complaining of an itch leg and lo and behold a patch of eczema on her upper thigh!

She normally had it on her skin creases/joints and back so this is new. I creamed it and I hope it responds to creaming as I certainly can't cope with more than one with eczema!

Yes, countryandkidswet wrapping worked for us too. It seems counter-intuitive but it really helped on very bad days.

I love wet wraps. Me and epaderm have a long standing relationship :-).

Btw dd having had AWFUL eczema as a baby is eczema free now (age 11).

Ds gets it occasionally now but again not as bad as when he was younger but maybe we've got better at dealing with it.

Dh overused steroid creams in his late adolescence/early adulthood and has quite bad thinning of his skin. He has sever eczema. Funnily enough since meeting me, it has got substantially better . I'd like to claim it was me but I suspect it was because dd and ds were v allergic children so I cooked everything from scratch (loads and loads of fruit and veg) and when I met dh the local Chinese and Indian delivery bloke knew him by name lol, I suspect he never ate fruit or veg and certainly never cooked!

Severe not sever fgs lol

Is sever eczema where limbs drop off as the skin gets too dried?

Lol

Well, DD3 has now got infected eczema AGAIN despite the Dermol's anti-microbial action she's now on fluoxicillin (sp?) the vilest tasting anti-b known to mankind (also leaves shocking pink stains everywhere).

GP changed the anti-microbial to Cetraben as the Dermol was making her scream in pain when it got on the open bits (i.e. a fair amount of her skin has the top layer missing or is cracked/fissured - prob 10% of her body [her face is clear] the rest is like the Sahara Desert within minutes of creaming). The Cetraben does the same where do we go from here?

He also only looked at her shoulder/back (had a small patch of weeping eczema on her shoulder that was infected - I had to peel her compression suit off it yesterday morning ) and didn't look at her legs/stomach/small of her back but still proclaimed it mild eczema! She has pigment changes to the backs of her knees about 3-4" across so they look tea-stained whereas the rest of her is very pale (so blinking obvious!) but he didn't look at them either.

How is everyone else's DCs? Hopefully not a weeping, infected mess!

Ow truth. I hope it improves quickly. What other creams have you tried? Are you supposed to put those on open patches - sounds really sore.

That antib is vile. I can't remember if you said you had seen a derm or not. Sounds like she needs to.