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

I know how you must be feeling. We battled with eczema with our DS when he was little to the extent that to enable him to sleep he had a layer of cream all over followed by wet bandages followed by dry bandages and a special sleep-suits with mittens to stop him itching! Sounds crazy but the doctor was right it worked!
The light at the end of the tunnel with us was that once he completed all his teething most the eczema disappeared and now at 13 he has lovely peachy skin!

I have had eczema all my life and am currently covered in a flare up.

DD2 (18 months) also has eczema and is covered all over her back, parts of her feet and her arms.

We are also using diprobase but she needs a stronger cream than the 1% hydrocotisone (sp.) she was prescribed a year ago. It was keeping it under control but it seems no longer to be the case

eczema is the bain of my life and I can hope dd2 grows out of it.

Great idea to start a support thread AnAirofHope, I hope you get lots of replies

Having constant battle with my DD (nearly 4) regarding scratching herself at any opportunity. A full nights sleep seems like a dream at the moment.

We use steroids, a hell of a lot of epaderm, protopic and zinc oxide paste bandages. It is such a constant problem.

Support thread good idea as no one who is not directly affected understands the drain of dealing with a child with chronic eczema, GP's not much use in my experience either.

Anairofhope have you had referral to Paediatric Dermatology Dept or similar?

Bump

We have been to docors and its just repect same stuff and come back next month.

Will post more tonight if i get time as dd sick.

Welcome everyone and thanks for joining in.

Moonlight i hppe you get better soon

DD1, DD2 & DD3 have/had all had eczema (and asthma & allergies) to one degree or another.

DD1 who is 6y has grown out of her eczema and out of her asthma pretty much completely. I have yet to reintroduce her to kiwi (skin reaction on contact) or give any of the DDs cucumber or melon (my own personal allergies). She can also tolerate commercial bath products and shampoos now where as she used to be confined to plain water and one prescription shampoo.

DD2 just has a small patch of eczema on one elbow crease (which she refuses cream for). It was a bit worse when she was younger (most joint creases).

DD3 is a whole different ball game. She has been eczemataeous since birth and has had multiple admissions for breathing problems (first bronchiolitis, then viral induced wheeze when she out grew bronch. and now it's asthma as she is over 2y).

She used to have a pattern - get a cold, get a new patch of ezcema, need hospital admission for treatment for breathing (has to have atrovent and slabutamol not just salbutamol otherwise it works for 45mins tops before she crashes again). The new patch of eczema would stay and join the other eczema patches. We used Diprobase and doublebase and avoided baths (just a once a week 'sheep dip' and washes in between as she would scream blue murder).

We got prescribed Eumovate cream last year just after she was 2y. It worked miracles - all her eczema cleared up within days. Then she got a cold and every single eczema patch flared all at once and DD3 went bananas, scratched herself to ribbons and got infected (just mildly thankfully and was controlled by fucidin cream). We have yet to get it under control since then (Nov 11).

She is currently wearing compression bandages (at times 24/7 but I have to take her out of them if she is wheezy [too tight on the chest if she is having breathing difficulties] or if she is pus-y), and is slathered with a 1:3 mix of Dermal cream with Hydromol to control infections. She is on a wheat free diet as she is 'mildly allergic' to wheat (eczema flares, very distressed and if she actually eats wheat in quantities more than a bite her lips swell).

She gets creamed sometimes 8-10 times a night (I'm counting when DH & I go to bed not her bed time!) as her itching is severe at times. She has also had a severe infection where her back looked like it had been burned (no top layer of skin and just raw flesh in places - boak) and it ran with pus.

I am so in the dark now as before with DD1 & DD2 I just used more cream and occasionally added in steroid cream if needed and it cleared up mostly. Now I haven't a clue and don't know what to do - DD3's paed. is just concerned about her asthma and just told us to not give her wheat if she's allergic to it (well DUH!) but no advice on anything else like what to do if she gets hold of wheat or if the wheat allergy is making her eczema worse (it's almost as bad now with no wheat as it was with wheat). Sorry for the epic post!

TruthSweet that truly sounds horrendous for all of you

As you already seem to be doing everything I don't know what to suggest.

The only thing I have to offer is maybe your dd3 is heat sensitive? I always flare up when I'm hot and I also have to have 100% cotton bedding.

You've probably already thought of that but if not, it may help ..

My DD has just turned 2 and has had eczema since being a newborn.
We use Hydromol as an everyday moisturiser after a bath (twice a week), Doublebase when she's dry, and Eumovate for flare-ups (and Locoid on the face). We seem to be keeping a lid on it this way, but we have to keep her nails very short and be very careful with sun creams, face paints, play doh or anything near or on her skin which is new.

In October, when we had that unusually warm weather, was her worst flare-up ever, she was red raw from heat to toe. We took her for a picnic in a sundress and overheard a lady say to her son "come away from that girl, you don't know what she's got" which really was a low point :-(
She's a happy girl though and copes with it well - we do a lot of putting cream on dollies and teddies...

She has cotton bedding BUT her compression suit isn't cotton (polyester & elastane IIRC!). If she's not in the compression suit she wears cotton clothes/pjs.

We have tried double socking her hands (one under the sleeves of the compression suit and one over the sleeves) but she drags them off even elbow length socks she is a very determined little girl when she wants something.

It was horrendous last night with DH and I going in every 20 mins or so for hours we are both exhausted. She doesn't seem to need as much creaming during the day so I don't know what it is (unless she is distracted during the day but has time to focus on the itching at bedtime.

stresshead - we have had people ask if she has chicken pox as her tummy was covered in little scabs - it wasn't CP it was where she had gouged at her skin and drawn blood

Hi everyone

i put the gloop on Hope everytime i change her nappy and i put it all over her skin even the none affected skin. The only problem is that her nappy soaks it up and disintergrates! As she is so little she has sleep suits with intergrated mittes that help and everything is 100% cotton.

I have started putting the steroid cream on thicker and leaving an hour before putting the gloop on.

Stressed do u have regluar meetings with the demologicst? Have u had her tested for allagies and have you asked if she needs an epipen? Or do u have antihestmine?

The dr give Hope trush cream for two weeks as well! We also have antiboitics for an infection but we have let to try antihistamone. We also havent had summer with Hope yet but we will be whining atthe same time.

Its so exhusting and demoralising to do everything you can and it still flares up.

AnAir - we found DD3's nappies fell apart from the cream but we tried Sainbury's Eco nappies (was worried that all the cheap nappies had switched to the gel stuff - for years the cheap nappies were wood pulp only which seemed to suit my DDs better than gel) and they seem to hold up to the cream better. Plus the size 4 fit well so they are generously sized (DD3 is 2.6y, 87.5cm & 12.8kg so not a little baby!) so you might be able to go down a size and get more nappies for your money that way (prob. best to buy the usual size in case that doesn't hold true for your DD and you get stuck with a pack of nappies that are too small!).

Last night I noticed DD3 scream as soon as the Dermal/Hydromol mix hit the open patches on her skin (hadn't twigged it before! I blame the sleep deprivation) so we decided to just use Hydromol after the initial creaming with the mix and she slept all night after being creamed about 4 times in the evening (I twigged on creaming 2 so she had 2 further creamings with just hydromol).

Normally if she has open patches she has 4-6 creamings after she has gone to bed at 6.30 then has 8 or more creamings after we go to bed (10.30 or later) so for her to sleep through the night is amazing! Guess what we will be doing this evening?

TruthSweet - so much of your posts sound like my life too - the sleep issue is such a nightmare isn't it. I now understand why chronic sleep deprivation is a method of torture. So glad you got a full night. We have stopped re-creaming in the night these last few nights to see if we can get DD to learn to settle herself back to sleep and not scream the house down - not sure if it's working yet. We too use compression garments and zinc oxide paste bandages (which I think are fab). It's weird how the compression seems to help the itching and horrid when ever we have to strip DD off for a bath and all she can do is itch itch itch.

We tried Dermol for a very short time last year and like your DD we had screams, then we got referred and Paed Nurses said that one is too astringent but we do now have Dermol 500 for handwashing at home and nursery and that seems to be OK.

AnAir - you are doing the right thing putting steroid and emollient on at different times, we too use sleep suits with integrated mittens as much as possible (DD nearly 4). I need to find some lighter ones now the weather has warmed a little I'm sure being too hot at night does not help my DD. The gloop does horrid stuff to elastic waistbands etc over time too, seems to loose the elasticity.

Keep creaming folks and speak again soon!

Cor Truth, if she's old enough I'd give her an antihistamine at night. Not every night but when it's particularly bad. Just clear it with her doctor because of her breathing problems.

I have bouts of v bad eczema and breathing issues - I would probably rip the skin off my arms if I didn't take an antihistamine when it's bad. I take Piriton but when it's really bad take Phenergan which works brilliantly. Both have syrup versions for children.

Ps if I didn't take them, I wouldn't sleep. When I'm tired, my skin gets worse. So I find it has 2 benefits - 1, that I sleep and don't scratch all night and 2, that I'm not knackered the next day.

(sorry I meant not knackered and my skin doesn't get worse as a result!)

My sleep deprivation has an added 'bonus' - if I get too tired and stressed I have a seizure (I am epileptic) so there is an additional reason to get DD3 to sleep (plus as she shares a bedroom with her sisters they get disturbed by her screams).

foxinsocks - I have asked about anti-histamines/anti-itch cream and basically been told they don't work to give extra relief/sleep so would not prescribe (eczema/asthma specialist nurse at local children's ward).

We do give her own brand Piriton syrup when she eats wheat after her lips swelled the one time in recent months she ate a good amount of it (one hot cross bun & a sandwich). This was when we were coming off the wheat free trial period and told to go heavy on the wheat to make sure she had enough to see if there was a reaction (apparently some parents give 1/4 of a biscuit or a bite of bread so check for reactions and this isn't enough for diagnostic purposes). That time she screamed until 3am and was red raw too.

It is such a mine field trying to work out what is the best course of treatment as the GPs just want to give Diprobase, the Paeds are interested unless the child is just a mass of raw flesh (or so it seems!) and there is no joined up effort to sort it. We just seem to have been lumped in the 'atopic' category due to the family history and just told to cream as there is nothing else really to be done.

Drives me scatty as I hate seeing my children in pain with no real resolution, at least when DD2 had JIA I could perhaps have persuaded the Rheum. to give stronger and stronger NSAIDS or go on MTT but with eczema the attitude just seems to be 'well don't let them scratch'

i think her skin is a bit better today but the bad red bits are drying up and there is still some on her face. the steroid cream then then gloop an hour apart help i think.

sorry i havent posted sooner but im having bf issues and im not getting any sleep at the mo.

i'm taking "carry on creaming" as our motto what do you think?

How is everyone else doing?

I don't understand how an (oral) antihistamine wouldn't work. If nothing else, it would make you drowsy so you are less likely to scratch anyway. We are all atopic too. I think they don't like prescribing them in case you get tempted to use them all the time.

Foxinsocks - we don't get much success with oral antihistamines either (DD nearly 4), don't really understand why but seem to recall GP trying to explain to me that it is not necessarily histamine casing the reaction. We have had all sorts of different ones but my DD doesn't seem to get drowsy at all. Phenergan was prescibed by HV but Consultant Dermatologist said it is not recommended as it can give nightmares in children.

Fox do any particular triggers for your eczema - assume you've had it for a while?

I would love to understand this more but my brain feels full (and tired!).

I was told by my gp that its not caused by allergies or anything it just happens and i just need to cream her up, after all its not life thretening gerrr.

When i cut out fish the difference was noticable. I would use antihistamine to see if it work when they are bad and red raw. I think it trial and error to find out what suits them best and try to find a routine that works. This is what im wishing for anyway.

I was also told that lots of children get ezcema and i was making a big deal out of nothing. I truly dont think people get what its like to live with. My dd is becoming more aware of her body and she is scratching her neck til it bleeds sometimes. Its horrible to see and when i stop her she just crys.

I think there is not enough emphy from gps in regards to the effect on the children and their families.

Im new to all this and im trying to find out what helps and find out all abnout the condition. I feel completly confused about it and i dont trust the gp and he hasnt given me any info about it at all.

It's the same with reflux. I got told when mine were small that it was only a bit of sick and that's 'what babies do' fgs. Both of mine had it badly, really badly. Screaming in pain, v little sleep.

I got told off for cutting out dairy when dd was a baby. GP told me what ridiculous parenting it was and how everyone was on the 'allergy bandwagon'. Got sent to a paediatrician who confirmed her milk egg and soya allergy (it was obvious tbh!) and an epigastric hernia and for the first time, dd was treated properly.

If you think something is wrong, don't be afraid to push for it.

Re the eczema, dh's is food related (he's allergic to chicken) and cats but his also worsens for change in temperature, stress and lack of sleep.

Mine I have no idea and I'm not 100% sure it is eczema or something else. And the GP has no clue either