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Feeling very low about dd's eczema - does it ever get better?

(32 Posts)
Utka Sat 21-May-05 01:30:45

It's probably just because it's the middle of the night, but I'm finding things very tough going at the moment, and wondered if anyone else out there ever feels like this. It would so help to know I'm not alone.

DD1 is 4 and has had pretty bad eczema for the last 2 years. It started when she was 4 months old, but hit a really bad point when she turned two. She's also allergic to various foodstuffs, which seem to set off the eczema too.

At the moment, we're wet wrapping again, but it doesn't seem to make much difference. Any improvements are soon undone during the day and we have to start all over again in the evening. Life for her and us seems to be one endless round of trying to identify the triggers - I feel like we are constantly watching her clothes, her food, what she touches, or else desperately trying to find some sort of way in which we can make it better - homeopathy, different creams, different shampoos etc. I think that if I search hard enough I will find the miracle cure (and I know there isn't one).I really feel I'm clutching at straws though.

She wakes every night having tried (and generally succeeded) in getting out of the wraps, and is nearly always grouchy and whingey first thing in the morning. We've had so few unbroken nights sleep in the last 2 years that I've forgotten what it's like to feel rested - what she must feel like I don't know.

To cap it all I just can't bring myself to be sympathetic anymore. It's as though I've run out of energy. When it 's my turn to get up to her (dh and I do alternate nights, although we both wake up on the other nights), I invariably end up shouting at her for moaning as I reapply the cream. Afterwards I feel dreadful, but at the time I just can't seem to do anything differently.

Tonight I ended up smacking her, which was hardly constructive. I feel absolutely awful now (as I should), but just don't know what to do any more. Has anyone else ever got to this point? What did you do?

All my contact with dd seems to be about some aspect of her skin or allergies. I feel like the guardian of her wellbeing, and yet powerless to do anything to help. It doesn't help that dd2 (who's 1) has perfect skin.

Sorry for the long post.

Chandra Sat 21-May-05 01:47:46

Ouch! Sorry you are feeling like that. I had some times when I became very frustrated because the thing seemed to improve and then came back worse than before, what has done all the diference in my case was to accept eczema as colds: they come and go and come again all the time, rather than continuing trying to find out what on Earth was causing it (though I got to this point after a year of frustrations). The dermatologist also mentioned that stress exacerbates it and as children are very sensible he did ask us to deal with the condition without making a lot of fuss about it to avoid making DS feel as if he was very ill).

I think it will go away or at least it will become easier to take care of, but in the mean time a big hug and lots of patience, remember your DD is very young so she can not easily control herself specially while sleeping, and that she is also suffering with the condition.


PS. Has she been tested for food intolerances?

tatt Sat 21-May-05 06:09:26

utka Sleep deprivation is used as torture - its not surprising you're feeling terrible so try to deal with that problem first. What wakes you - if its noise try the foam earplugs from Boots? Wax ones melt all over you. If possible let the one who's not "on duty" sleep further away from the fuss and buy a very low wattage light bulb so having the light on in your child's room doesn't disturb you.

A child in one of my children's classes had very bad eczema for years. About age 6 there was a big improvement so they didn't have to wet wrap. They don't know what caused the change, unfortunately. And on another thread an improvement as an adult is reported after having goats milk.

Have you tried probiotics and fish oil in your child's diet? Probiotics sometimes help and fish oil makes them work better. My son's eczema improved on this although that may be coincidence. You do need to try for quite a long time. You'll find lots of tips on mumsnet - putting something over the acqueous cream may help. Think it was liquid paraffin?

Nothing works for every child but there is still hope that things will just improve by themselves.

Utka Sat 21-May-05 09:21:15

thanks for the support. We've just started fish oil (having to hide it in her milk as the taste seems awful!), and I'm hopeful this may help. The stress factor is definitely an issue, which is why I get so mad at myself for getting cross with her - this is hardly going to help. She has been on goats milk for 2 years, and has had a series of RAST tests for various intolerances, so we're fairly well up on things that aggravate it. As Chandra says though, I need to accept that I cannot control what's going on.

rickman Sat 21-May-05 09:36:30

Message withdrawn

donnie Sun 22-May-05 15:12:33

I really sympathise Utka - eczema on this level in a little child is awful, our dd had it so badly too but wet wrapping did sort her out quite well. we have just had another baby abd I worry that she will also develop eczema at the same age as her sister, around 3/4 months like your child. One thing that a couple of people have sworn by is having a water softener installed in their home - apparently it has made a radical difference to their kids' eczema but obviously it's quite expensive to do this. No advice really but lots of empathy. By the way your frustration and the smacking is completely understandable and believe me others including me have done the same. Your dd won't remember anyway so don't feel guilty - you are exhausted and worried.Good luck.

misdee Sun 22-May-05 15:21:50

i wishi could stand up and say, yes it does get better, but atm we are still waiting for an improvement. dd12 dermo is confident she'll outgrow hers in the next 2years.

the sleep deprivation is the worst, and i'll admit that i did really lose it when dd1 was younger. she could escape from the sleepsuits even with button ties done up as tight as possible, and would scratch herself to pieces in the night and start screaming in pain. dd2 eczema is mainly on her hands, and it doesnt seem to bother her too much, she scratches but she doesnt scream about it itchign or being sore as much as dd1 did.

misdee Sun 22-May-05 15:22:17

dd12!!! i mean dd1

pupuce Sun 22-May-05 15:23:59

Utka- a friend of mine had the same problem and when her DS was 5 she seriously thought he wouldn't even be able to start school as he was unable to hold a pencil as all his creases were red, sore, etc. He could hardly walk too !
My friend said her son scrateched all night and it was horrendous.
She tried everything including strong drugs and wet wrapping - nothing really helped.
Homeopath helped for a while and it came back. Then many people told her to go and see a lady who had solved many times such extensive eczema.... she went .... very skepitcal as she thought she had tried everything.
This lady told her why her son had eczema, she gave her a supplement/vitamin? for him to take, made her buy sepcific pyjamas, made her wrap her DS's eczema in manuka honey twice a day and said there would be a significant improvement in 2 weeks.
Two weeks came and nothing, my friend said : great another £100 wasted ! Three days later he was totally cleared ! And he still is !!! She can't believe it ! He is a different child.
She is in Kent - don't know where you are but if that is helpful, feel free to CAT me.

tatt Tue 24-May-05 06:13:07

utka hope we aren't making it worse offering suggestions. Sometimes there are children - like the child at school - who do not seem to benefit from anything. Trying everything you can may give you hope or it may just make you feel useless. But that child did improve eventually, even though her parents could not relate it to anything they had tried.

bunny2 Tue 24-May-05 19:47:26

Utka, we have been there and I haven othing but sympathy for you. It used to break my heart to see ds suffer but there were times I used to feel angry with him too. It is fine to feel like that, caring for a child with severe eczema is a huge responsibilty and doing ti with little decent sleep makes it one hell of a difficult feat. Do you use piriton? I used to feel bad about using it regularly but when ds is very itchy, a large dose means we all get a better sleep. Also, another thought, with ds the wraps worked well at first but then ceased to work at all and his skin got worse. Eventually we were told by the paed derm that ds had a fungal infection under the wraps and this was making everything worse. Make sure your dd doesnt have this problem, it is quite common with wraps as fungus thrives in damp conditions.

You are doing a fantastic job, remember they used to hospitalise children for this treatment, the fact that you can do it at home is testmanet ot your dedication and determination.

bunny2 Tue 24-May-05 19:49:10

you asked if it ever gets any better? Ds, 5, still has eczema and still wakes every night but his skin is 85% clear now and the eczema persists mainly on his hands. Now we need to tackle his sellp pattern, he is just in the habit of waking at night whether he is itchy or not.

loulabelle222 Tue 24-May-05 21:52:27

Hi my ds is 13m and had eczema from very early on. I would check him in the night and his bed would be covered in blood where he had scratched himself so much through his mittens. I was constantly round the doctors getting aqueous cream, e45 bath stuff , and many many steroid creams. Sometimes things would work but only for a few days and then it would be back 10 times worse. In the end I payed £100 to go and see a consultant privately just for a second opinion. I had heard so many stories about not bathing him to much but i bathed him daily sometimes twice or 3 times to moisturise his skin. The doctor told me i was doing the right thing and we had a talk for about 45mins whilst he looked at ds. I was bit unhappy though because at the consultation ds skin was the best it had been for months (typical)
Anyway-- getting to the point he prescribed me Protopic 0.5% for his face (non steroid) and elocon (i think that is how it is spelt) for his body . I used it for a week and now only occasionally do i use creams or anything. He may get the odd flar up but nothing to how it was just a little patch of red dry skin. That consultant saved me from all my hair falling out. I am so grateful and pray that it never comes back. That was about 7 months ago now and never has it come back looking like it did (nearly purple!) touch wood! I still have 3/4 of the creams left!

Utka Tue 24-May-05 23:19:02

Thanks again everyone for the support. It makes a huge difference - even if your're saying that the eczema is still there. I've come across other people mentioning Protopic - what exactly is it?

We do use Piriton sometimes, but I worry about having to drug her to get her to have a full night's sleep.

Not heard about the fungus though - that certainly could be an issue. I hate not doing the wet wraps as I know it means a broken night, but I hadn't realised we could be perpetuating things. The manuka honey also sounds interesting - how do I CAT you pupuce? We're in South West Surrey, but my parents are in Kent, and in fact I'm over there early next week.

Utka Tue 24-May-05 23:21:14

sorry pupuce - have just spotted instructions on how to CAT you and have done so!

alexsmum Tue 24-May-05 23:34:51

just wanted to add my twopennorth.both my ds's had severe eczema when they were smaller and i know how you feel, i really do.But they are both now absoluely fine.They have a small patch each at the moment which we are just moisturising, and its not bothering them at all. It does get better, honestly.
I'm really surprised that your doctor hasn't prescribed you an anti-histamine.As well as getting a nights sleep which is really important,it will also help break the itch/scratch cycle.Please don't feel guilty giving it to her-it will help both of you.
We were referred to a community paediatric nursing team, who were there to support us at the bad times and looked at all the stuff we were using and gave us new stuff to use and tips for things around the house that we could do to help.Maybe ask if you could be referred on to something similar?
Just things like, never putting your fingers in the tubs of emollient- scooping them out with a spoon instead.We would never have known that.
Anyway, best of luck- you're not alone.

P.s have you been in touch with the national eczema society at all???

Chandra Tue 24-May-05 23:52:37

We have used protopic (tacrolimus), is a medicine that reduces the excessive immunological reaction that cause eczema. I would only use it for really extreme cases as it is a medicine that had lots of interactions with other things (the active principle is also used in organ transplants to lower the immunological reaction of the body towards the new organ), it should be stoped around vacination and interacts badly with ibuprofen (nurofen). It has been in the market for less than 3 years so it has not been tested thoroughly, there was a thread sometime ago as it was suspected it increased the chances of skin cancer (which I found shocking considering the short time it has been in the market). The thing is very effective, very expensive as well, about 60 pounds a tube, but then we had a tube for more than a year and only used less than half.

Chandra Wed 25-May-05 12:08:09

HOw are you doing Utka?

loulabelle222 Wed 25-May-05 14:22:53

i was never told this chandra but i do use if v little maybe once a month not even that

keresley Wed 25-May-05 18:47:36

Utka, reading your message nearly made me cry as i empathises so much with you. My baby of 51/2 months has severe excema. He is covered in it from top to toe, the only place he is clear is his nappy area. I have spent literally hours researching on the internet. We have found that the best things so far are SOS cream by barefoot botanicals. It is £15 a tube but, when my baby makes his skin weep (which is every day) it stops it from weeping almost immediately and heals the skin quickly. Also we have adapted a gro bag so that he can't reach his face with his hands. This means he has a much better nights sleep. I often feel devastated by my sons sore skin but find my husband a huge support. It is when we see baby's on the Tv with serious life threatening illnesses that we are able to put his excema into perspective. Having a baby with excema is a full on 24 hour job, the way you feel so fed up is only normal so don't feel guilty. I hope by reading all these messages that you realise that you are not alone. Hugs to you

Utka Thu 26-May-05 21:57:14

Things are going a bit better. We're experimenting with no wet wraps, just normal PJs, except for her socks and gloves. The thinking is that if she can't scratch (because of the gloves), or reach her ankles (currently the worst bit), then things should ease up a bit. Last night wasn't too bad - only a couple of wakings.

We have used an anti-histamine in the past, and in fact the doctor has just prescribed Loretadine because we suspect DD1 has hayfever (things always seem to really kick off in May with the tree pollen). She had been on Piriton am and at night, but we stopped giving her this when we started the homeopathic treatment.

The homeopathic remedies (sulphur initially, then something related to tuberculosum? and now sulphur again) have been very good, but the tree pollen seems to have overriden the effect.

Part of the problem is that I feel we are stabbing around in the dark for a solution, and hence trying too many things simultaneously. Not quite sure what to do, as I don't want to stop the homeopathic treatment, but can't bear seeing dd so uncomfortable with what is obviously hayfever.

Anyway, have been much cheered by all the support on MN. I was feeling pretty desperate last weekend when I posted, but knew that even at 2am I'd get a response and I did. Thank you.

pupuce Thu 26-May-05 22:12:29

Utka - I know the feeling of trying everything at once... been there. Hang in there

Chandra Thu 26-May-05 22:29:54

Gad to hear that things are getting a bit better. The other day I felt a bit bad about my posting, I remeber how bad and frustrated I felt about DS's eczema, we had the breakthrough with a treatment prescribed in Spain but I understand that the fact that it has worked for DS doesn't mean that it will work for everybody else, after all I don't know how many times we tried things that worked wonders for other people's children and didn't have any effect on DS.

About homeopathy, we went to a homeopath that had just graduated and was still working under the supervision of her tutor. The first prescriptions (reviewed by the teacher) worked wonderfully, the eczema went bad then improved and another remedy he got for late teething made DS also very active and well, we saw a different boy. However, as soon as the tutor supervision ended things started to go pear shaped, and this doctor asked us to substitute emolients with calendula cream... Huge mistake, it went of course badly and in the next appointment I realised this woman had never seen a real case of bad eczema after she suggested me that I didn't needed to apply creams if DS was itchy but that I should try to distract him instead Yeah right!, as if it was that simple.... I think that homeopathy is a fantastic medicine but it is far more precise than conventional medicine if the remedy is not the right one and the dose the perfect one it doesn't work as it should.

Chandra Thu 26-May-05 22:30:18

Glad

whymummy Thu 26-May-05 22:33:38

has anyone tried algaa?is a seaweed powder,my friend gave me some on sunday for dd (5),she was left with really bad dry skin,itchy and raw in places after scarlet fever so i don't know if it was ezcema,anyway you mix this algaa with boiling water(stinks) and apply it to the skin when is tepid, two days later i added two tbspoons to her bath water and some sea salt and today her skin was all clear,it said in the instructions is for all sorts of skin conditions

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