4 yr old eczema out of control, we're desperate

[gingerninja]

The last 6 or 7 months have been awful for my family, mostly my DD who is suffering chronic eczema all over her body. We have tried so much that I'm not sure what to do, I feel helpless and desperate when I watch her tearing her skin to shreads and crying asking why she has been made like this.

We were refered to a dermatologist a couple of years ago who we've seen every few months and recently saw the nurses at our hospital for advice and management. I feel like we're being fobbed off all the time and just not getting support.

We are now using Eumovate oint steroid as HC stopped working. We are also using epaderm ointment emollient.

My daughter has the dryest skin I have ever seen and I'm applying moisturiser as often as possible, sometimes up to 6 times a day. Her face and scalp are particularly dry at the moment, and nothing seems to be working. She is having constant flare ups all over her body, we've been using Eumovate constantly for about 8 weeks now and just when it seems to clear from one area we get a massive flare somewhere else.

The eczema is increadibly widespread which makes it really hard to manage with steroids as we seem to be putting them all over her body.

I can't get her to stop scratching, we use ucerax anti histamine, and she's torn shreads out of her body.

She is generally miserable and irritable and hard hard work. (understandably) I try and make the creams as light hearted as possible but she hates it and fights me all the time, she screams and screams at bath time and in the morning when I pat her down and cream which makes the beginning and ending of the day increadibly stressful.

It is breaking my heart, she is such a beautifully natured, kind and sweet girl but eczema is taking over and ruling our lives, we are all at breaking point. Please can anyone offer any advice? Many thanks

I dont know if this will be of help but when my daughter was younger , I read that an application of pure saflower oil helped and a quarter teaspoon of the oil in some juice Orange etc each day with breakfast could help. It would take some weeks for results . Also (my daughter was 6 years old) increase the intake to 1/2 ts after a week and to 1 teaspoon after 2 weeks. It took about 4 weeks to see the results and the inflamation was reduced considerably. At one time in the night she was complaining so I dapped on the oil and i about 10 minutes the soreness had gone.
I also read on the internet that people are much too low in Magnesium and have too high an intake in calcium. It might be worth while doing a thorough check out on this. Cerainly in the past i have found natural intake of minerals or vitamins has had better results than Pharma chemicals. But like I SAY DO YOUR OWN RESEARCH. Each body responds in different ways, so no one alipathic remedy is a panacea. Good Luck

We didn't look back after our son was referred to a consultant

He prescibed a strong steriod cream for him, the gp was very reluctant to give us anymore of it, but it worked and he was never as bad again, as everyone else has said I think you need to take drastic action to get the skin back to a healthy state then start again.

He also prescribed Dermol cream, bath and shower gel which helps to keep infection at bay that seems to help.

Are they sure there is no infection that needs treating?

And I know what you mean about piriton and the alternatives, we gave up really in the end with them.

Thank you all very much for your messages,they mean a lot.We've had a good day today. Decided to get a referal from GP to private Peadiatric Dermatologist as trying to get an appintment with our Dermatologist is too difficult. GP was shocked at the state of DD and said we need immediate action and prescibed a course of oral steroids. Not something he really wanted to do but felt that she needed something drastic. Also prescribed antibiotics as her skin is very hot and inflamed and wasn't convinced there wasn't an infection so even though oral steroids are a bit scary I'm willing to give anything a go for her to have peace. Crossing fingers for a quick release.

Now, when we saw dermatologist 3 weeks ago, DD was in similar state, she was very dismissive and just told me to carry on with our current course of action. Blah Blah, don't know why she didn't offer us this and feel really let down by her.

donnie when we were initially refered to the hospital it was for wet wrapping but the nurse we saw said that they don't do that anymore and instead they just 'chatted' to us about a programme of care with no interest in follow ups. I felt really miserable after seeing them because I thought we'd gone as far as we could and weren't getting any help. I'm glad that's changed today. We actually bought a load of dermasilk items too based on all the promises and the Dr reluctance to prescribe. can't say I've seen a difference since using them tho.

Hi,

So sorry for the suffering your dd is going through. My 2yr ds has ezcema, though wasn't as bad as yours it was still horrible to see him itch and leave blood stains on his cot sheet every morning.
It has been much improved since we saw a homeopath in July. She identified a few allergens that we didn't know about ( though we knew about the cows milk, egg and banana ) and gave us 3 remedies. So along with giving the remedies we dropped a few things from his diet, like raspberrys and MSG. Like others have said he is also sensitive to dustmites and other hayfever type things.
Within 3 weeks of starting the treatment his chin was completely clear. We saw her again in Sept and the machine she uses to assess the sensitivites showed an improvement, so much so that he should be able to tolerate cows milk. Haven't tried it yet though ! Seeing her again in Nov.
I don't fully understand how it all works and ideally its best to find someone recommended to you as there are many people who advertise on the internet. Also I hear stories of people with less success so you would need to do your own research but all I can say it has worked for us.
Hope that helps. Feel free to ask any questions, and if you are in Buckinghamshire I can give you her name.
Hope you find the right treatment for her xxx

Jumpinjojo, if the homeopath is using a Vega machine to assess food sensitivities (which very often they do) I would be wary. Has your child been 'officially' diagnosed with cow's milk allergy? Reintroduction on the basis of an alternative allergy test might not be a great idea.This recent article - surprisingly sensible given the source - reviewed three alternative allergy diagnosis methods in a child with a diagnosed, life-threatening allergy to specific nuts. None of the alternative tests picked this up at all, which is extremely worrying.

Hi Claire, thanks for your concern and advice. Interesting article. Sorry, Gingerninja to go off topic slightly.
He has been skin tested for the cows milk and egg allergy and we will see the NHS consultant in Dec for another test, so I do plan on waiting to see him first. I am just hoping that he has less of a reaction otherwise I will feel torn. The Vega machine only confirmed what we already knew and high lighted other sensitivities which the NHS dr / dietician hadn't - like the raspberries and MSG. She gave us no major surprises, unlike the child in the article.
Thankfully, his allergies have been limited to reactions on his skin. I am wary but it does open ones eyes to other options. I also wouldn't want someone to do something on my say so which is why I said for gingerninja to do own research and definately use someone recommended.

Thanks

Jojo, my ds also had Vega test :) and it was spot on with all what I was suspecting plus what was already in some other tests.
Plus it identified fungal infection that I didn't know about at the time, but when I read up on it and inspected my ds head to toe, it proved right too. We were also given advice on nutrition, which was waaaay more than we ever got from GP/NHS.

OP, if the sensitivity foods are removed from the diet then the reaction will lessen (this does NOT apply to true allergies).
To moisturise skin you really need to work from the inside, my ds used to have very dry skin, literally like a sandpaper, tests had shown that he was badly deficient in omegas and this was due to the fact that gluten blocks absorption of fats. Initially his skin improved dramatically when I added omega capsules, but now that he is gluten free I don't bother any more and his skin is absolutely fine with no mosturisers at all.

So much is in good nutrition, some families swear by dairy-free for eczema too.

gingerninja - the best of luck with your private paed appt - I really hope you get some practical and real help. We paid through the nose for ours but we only needed 3 -4 follow up appts max over the next 18 months. IME only a paed/derm will do - witht he best will in the world, the GPs just do not know what they are dealing with.

Good luck - you and your dd deserve it.

points we followed, when our son had bad eczema.

dustmite covers for mattress, duvet , and pillow cover.

wooden flooring for bedroom, and toys boxed.

all teddies put in freezer over night before washing.
only one teddy on bed.

damp dusting bedroom, boil washing bedding.

wooden flooring in most rooms, leather furniture, hepra vacum cleaner.

no hanging of washing on line (due to tree pollen allergy and hay fever)

no hanging of clothes on radiatiors.

no clothes in airing cupboard.

bath time,
soap =aquas cream, and bath emolient,
pjs never warmed, in fact , waved out window when it was freezing cold!

boil washed towel.
then the steriods and 50 /50% soft parrafin stuff.
applied in direction of hair growth, pump style bottles used for hygeine, or a spoon to remove small amounts from pot, before rubbing in to skin.

5 times all over moisterized each day, which was obviously easier before school.

8 times plus for flare ups.

---

all pjs and clothes covered in creams and ointments, soaked overnight in a bucket of cold water and salt, then next day washed at 40 degrees. this isnt of any help for your childs skin, but it will save the rubber on your washing machine, and elastic on clothes.

of course, although this did cause some improvement, what made things better was the dianosis of food and environmental allergies.

am aware that isnt always the answer for all with ezcema.

i didnt want to give advice, but thought if i listed our steps , something might be of use for you.

Just found this thread and I'm shocked that you cant get an appointment for a dermatologist and that you didnt find the dermatology nurses much help.

I suppose it varies depending on which hospital you go to, but our nurses were fab. DD looked like a burns victim when we were eventually referred (after me staging a sit in at the doctors surgery!) and the nurses had her pretty much sorted within a couple of weeks and were always at the end of the phone if I needed advice/additional appointments.

Turned out DD had a severe dairy allergy but if its any comfort to you she seems to have grown out of it.

Things that helped for us were the porridge oats in the bath and also olive oil rubbed directly onto her skin.

We also just let her sleep in a vest as any heat during the night would irritate her skin.

Also made sure that as well as vacuuming the floors, I also did her bed mattress.

Hope your appointment goes well x

Btw your nickname is the same as my dd's!!

Gingerninja hello old friend , so sorry to hear that DD is still suffering. Haven't had time to read the whole thread yet and sure you've had lots of good advice but will have a look through and PM you if I can add anything!

thanks to all those that responded and Hi Meg, lovely to be in touch again, I don't come on here very much anymore.

We saw the consultant yesterday and he was great, appauled that we'd only been refered to second tier GP as opposed to proper dermatologist as DD is now 95% covered in atopic eczema. He refered to it as pretty awful and as bad as it gets.

Was very encouraging and decisive about plan of action. We are to go back in a month and hopefully by which point we'll be in a much better position. He has prescribed a month long dose of oral steroids to buy some time and also stronger steroids for her boday and face and gels for her head etc etc. Today she's looking a bit better already, though her skin is still shedding like a snake, at least some of the redness has gone.

I now feel hugely let down by our previous 'specialist' GP who always was so dismissive and had an attitude of 'i've seen worse' but looking forward, hopefully this is the start of the end of it being such a nighmare. Can't believe we wish her skin to be the way it was a year ago when we thought that was bad!

Glad you got better help from this appointment.

Does your dd take Omega supplements. We were told to give dd these and there was a definite improvement in her skin over time. I also make sure she eats plenty of fish.

Have the dermalologists considered if she has ichthyosis? its a dry skin condition & affects skin all over, skin is usually scaly/flaky & cracking in places, also prone to eczema. Just in case, because the treatments are slightly different than for eczema. Hope things improve for your DD.

another sufferer here. try swapping to soap flakes for laundry. My skin hates most detergents but soap flakes are fab. If you can wash her hair over the sink so the shampoo touches minimal skin also helpful.

Omega supplements do help. lanacane cream fab for removing itchiness. Emoillent, emoillent emoillent. when mine is really bad it turns into lots of little splits in the skin - water hurts. i found rubbing oilatum in the skin then a very quick rinse off in the shower least painful.

Ginger, I know this is an OLD Post, Does ur Daughter still have bad eczema..Give me an update.