Does Anyone Find it Hard to Cope and Stay Motivated?

[clairebear_2uk]

help i am at my wits end. my 5yr old boy is just getting worse. over past 2years having more bad than good days. tried most steriods going, emoillents wraps and bandages, sedation medicines - nothing working. has just been on ciclosporin for 6 months no improvment and became quite ill with eczema herpeticum. is now on methotrexate. skin just not healing. sleep deprivation main problen. have tried piriton, phenergan, vallergan and has been on eucerax for past 4 months with no effect - scratches for about 9 hours of a 12 hour sleep, tried wet wraps, and pb7 bandages but he just rips them off himself to scratch , dermasilk leggings he likes but dont do anything for itch. now any of creams he says are burning him. he is currently on elocon - burns, betnovate and protopic but with no success and the ointent hydromol. allergy testing shows allergy to egg, but cutting egg out has made no difference. feel no where to turn should i ask consultant dermatoloigst to refer me to a paediatric hospital , thanks claire

[admin]

So sorry to hear things are bad for you. Have you tried Hydrapid moisturiser/emollient. It's been designed to work in harmony with DermaSilk so it may not sting like the others you mention. Not sure if Hydrapid is available on prescription but you could ask your GP.

Hope you get more help, tips and support here in the Forum.

Deborah Mason
Founder

[AnnaB]

The emollients are stinging both my children at the moment especially on their faces. I specifically asked the Dermatologist yesterday and she said they all will to a degree. So today, as we are home due to other illness I have creamed them four times through the day and patted the hydromol on rather than rubbed it. I would say a slight improvement by bed time, skin was better than if creamed only twice for sure. There is also Emolin spray which my kids love, where there in no need to touch them and it is cooling. They love it. It is like a can of hair spray. Cover the floor, mind the eyes and away we go. It is just lovely that for once there is a cream that makes them laugh and ask for more. It is also good for a fast application if in a hurry.

[asianwriter]

Hi, i know exactly how you feel. i joined today because i felt that i needed to speak to like minded people who have the condition. ive never met anyone before who has the same condition as i do and it is such a relief to meet people who know how i feel. i thought i was the only one who felt down, depressed and alone about having eczema.

i know that its hard, but we've all gotta hang in there. (easier sed than done, i knw.) but remember, we are all here to support one another and benefit from each others advice.

hpe that's helped.

[asianwriter]

hi,

i just wanted to ask that does anyone else find it hard to keep motivated in keeping skin moisturised? i find it soo hard to use my emollients and moisturisers. i dont knw why. i knw that i should, but i can't seem to motivate myself too keep at it. i will only use them when my skin has gone really bad and i know that i need to use them now. but then after tht, i will just leave them. the way i feel, is that if i dont look at my skin, the problem isnt thr. which is why i always wear long sleeved tops and trousers. out of sight, out of mind mentality. does anyone one else feel this way or is it just me?

thanks.

[AnnaB]

moisturisers need to go along side brushing your teeth at least. Morning and night. Good days and bad, 365 days a year. We were told to cream everywhere everyday at least twice a day. There is a spray can Emolin which might be a help to make life easier and faster. Regular time spent may easy the terrible flares and discomfort and result in lifting your mood. Chin up.

[itchyhippy]

hey
no you are totally not alone! i get really complacent with my skin. i often wonder why i should bother cos no matter what i do it will always be there, and whenever i go through a bit of stress it will always get worse - no matter how good i am at keeping it moisturised!!
I sometimes also get to the point where i wonder why i should have to bother! why me? why should i HAVE to do this every night, it doesnt seem fair

so no. ur not alone!

[Sammie]

I have suffered from eczema on the palms of my hands, soles of my feet, legs, arms,under my arms....for what felt like eternity. My eczema started when I was 17. I am 37 now. It started on my left toe, with a cluster of tiny blisters. I squeezed them, covered the weeping sore with a plaster. Next couple of days it had spread, and was now on the other foot. Over the next couple of weeks it had spread to the soles of my feet and the palms of my hands. I would wear bangages as there was no skin on my feet. and also my hands and there was no skin on those either. I could bearly walk, and my socks would be covered in blood. They itched, weeped, split, bled, throbbed; the pain was...well, I learnt to block that out.
The years past, doctors and specialists love to hand out steriods. And the bedside manner of some, are something to be desired.
I have had people look at me like they will catch something from me........well, I didn't let anyone touch me, I was more likely to catch something from them....all those germs...and my open wounds....
I'm of the belief that if someone likes you it does not matter how you look, it's what makes you who you are. My partner and friends embraced my disease, that was part of who I am.
I am disappointed that you feel this way about yourself...And have found that being able to laugh at yourself is a sure way to shut other people up...
Where it is not funny, and I myself have spent many years crying with pain, anger and frustration. It is good to be able to break the cycle and laugh.
I was told by my specialist, 'there is nothing we can do for you, you will have to take steroids'...mmm steroids again.
Anywayz...I haven't had eczema in years..I sometimes get a twitch in the summer. But I don't for one minute think it will never come back. I have learnt throught finding the triggers, and changing my lifestyle and attitude, keeps it under control.
But, my years of suffering and pain, have made me who I am today, I am strong, I have a very high pain threshold. And, I accept people for who they are. I don't want to be like anyone else. And I will always have purple feet....

[Sammie]

I myself have suffered from eczema for 20 years, and my children had it also when they where very young. I have not had eczema for many years now, nor my children. We are chemical free and have made many life changes.
It is very frustrating when your child is in pain, and you do everything you can to help stop their pain.
I have found over the years most steroids only work briefly, and bring temporary relief. I myself refused to use steroids on my children, as they cause so much damage. But for so it is the only option.
Scratching is usually due to infection. once the infection is under control, the itching usually is minimal.
Betnovate c cream is good for clearing infection. I myself have always found that wet wraps only served to make matters worse for me. I bandaged my hands and feet at night with streach bandages. Keeping nails short too. Also I used and still do, use olive oil when my childrens skin or mine is dry.
I strongly believe that many of these skin diseases are caused by chemicals either in cleaning products or what we eat.
I think you should insist that your child has patch tests. And ongoing problems with skin are usually due to something that your child is touching or eating.
My eczema always went in cycles that lasted for four weeks, starting with contact, blisters, itching, infection, newskin, one week of freedom. and the cycle would start again. It is good to remember that whatever changes you make take a few weeks to see any results.
I wish your child well...x

[AnnaB]

There really are NO easy answers or a right or wrong way to go about treating eczema.

My son and daughter have both suffered from within days of birth and were purely breast fed, so that rules diet out. My son has had patch testing and the results were all clear, it just left him scared of plasters.

We have protective bed covers and taken up all carpets even in the bedrooms. They wear nothing but cotton.

The only thing I hang onto is when either of them are ill (which has been a lot in the lastyear) and we are stuck in doors their skin clears up even when cream routines not followed. I just feel it is the out sdie world they are allergic too.

Anna x