Losing Hope

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9 posts
msom
Posts: 1
Joined: Sun Oct 31, 2010 10:04 pm
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by msom on Sun Oct 31, 2010 10:21 pm

End of my Tether

please help... my daughter has terrible eczema which is affecting her life so badly. I feel so giulty that I have not found a way to help her and I am at a loss to know what to advise. there are so many options and "miracle cures" but we dont know what to believe

mandyafc
Posts: 11
Joined: Sun Sep 19, 2010 1:35 pm
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by mandyafc on Wed Nov 03, 2010 10:53 am

Re: end of my tether

Hiya, how terrible for you.

What have you tried so far and what does your doctor say, is she seeing a dermatologist?

Mandy

Heidijo
Posts: 34
Joined: Tue Mar 23, 2010 5:37 pm
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by Heidijo on Wed Nov 03, 2010 2:02 pm

Re: end of my tether

hi can remember that feeling of not being able to fix it "as we mums normal can or do"
keep on at the docs even make a pain of yourself i used to go all the time then i got refered i think just to get rid of me! there is lots of help you just need to get into the system. good luck

itchyhippy
Posts: 46
Joined: Tue Sep 15, 2009 12:08 am
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by itchyhippy on Thu Nov 04, 2010 12:53 pm

Re: end of my tether

hey there
it must be horrible seeing your daughter going through so much pain. Unfortunately there is no 'miracle cure' and the annoying thing is that each case of eczema is different and people respond to different treatments. sometimes it is a case of trying everything to find the one that works.
I went through real hell with my skin last year and not only was it bad for me, it was bad for my partner who felt he couldnt do anything to help me. It was the little things he did that really helped me though. Just having someone to curl up to and knowing that he was there for me really helped. he also kept tellling me how he thought i was still beutiful and that i was a really strong person for putting up with my skin the way i do. These things meant the world to me cos its so easy to get depressed with it and when your skin hurts - you really don't feel attractive. it may have been a pain for him to tell me all the time, but i needed to hear it.
Stress can also be a big factor in eczema so it may be worth making some time to have a chat with her just to make sure nothing is causing her any worry.
So as well as hassling the doctors (which you do sometimes have to do) Just make the time to make her feel special and loved - have some girl time.
hope this helps and you find something that works for her skin. x

kstanton89
Posts: 1
Joined: Tue Nov 16, 2010 6:40 am
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by kstanton89 on Tue Nov 16, 2010 7:11 am

Losing Hope

I am almost 21 years old and I have had eczema since I was two weeks old. I have it in the bends of my arms as well as my hands, neck, scalp, eyelids, around my mouth, and the rest of my body still gets dry and very itchy. Over the last twenty years I have tried avoiding foods, allergy medications, oral steroids, topical steroids, immuno-suppressants, vitamins, and dozens of different lotions. Several things work for a week or so, but it always comes back. The only thing that wiped it out completely was Prednisone, but I was only allowed to be on it for a week because of the severe side effects. It seems to continually spread as I get older, and I am at the end of my rope.

I use Elidel twice a day, but it barely keeps me from tearing myself apart. I have a humidifier in my bedroom, cover myself in lotion after every shower, and have to use chapstick on the area around my mouth because it sucks up lotion and quickly dries out again. Currently in my diet I avoid all junk food, sugar, meat, and dairy, but it's not doing much anymore and its very hard to keep to when my family eats whatever they want. My parents are planning on sending me to the Kushi Institute in Massachusetts in December to learn about the Macrobiotic diet and hopefully get rid of this for good.

I'm looking for any new ideas to try, anyone who has tried the Macrobiotic diet, or just a person to talk to. I'm sick of people telling me they "barely notice it" and looks of pity, but I don't know anyone else who actually has eczema. I think just having a friend to talk to would be amazing.

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admin
Site Admin
Posts: 131
Joined: Sat Mar 08, 2008 6:28 pm
Location: South East, UK
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by admin on Tue Nov 16, 2010 10:42 am

Re: Losing Hope

Hi - thank you very much for your posting in the forum. Until Friday, we are running a joint NHS Choices/talkhealth forum where we have 4 experts answering patient's questions - two specialist dermatology nurses, a dermatologist and a clinical allergist. As you know, many patients with eczema never get to see a specialist so this is a really fantastic opportunity to get concerns and questions answered.

I have, therefore, copied your question over into our NHS Choices forum. I'm sure other eczema patients will want to comment on your post, but it would also be advantageous for you to get some advice from our experts. I hope you will find their comments helpful.

Many thanks
Deborah Mason
founder talkhealth
talkhealth team
Read our health blog - http://www.talkhealthpartnership.com/blog

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Dr_Antony_Crockett
Posts: 3
Joined: Fri Nov 05, 2010 12:24 pm
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by Dr_Antony_Crockett on Tue Nov 16, 2010 6:34 pm

Re: Losing Hope

It sounds like you have really bad eczema.
Sometimes when you have bad eczema for a long time, everything seems hopeless. However, I was heartened to hearthat prednisone led to complete temporay remission. The trick now is to get the good effects of the steroid tablets without the side-effects.
I would keep the house pleasantly cool with comfortable humidity. Make sure you asthma and rhinitis (hay fever) are perfectly controlled all the time, if you have them, as control of one type of allergy is important in controlling other types of allergy. Wear loose cotton night clothes, avoid feather pillows, and don't use fabric conditioner or biological washing powder. Your diet sounds quite restricted. Food allergy is not often very important in eczema in adults, and it is easy to risk getting vitamin deficiency or even malnutrition. I usually say to people who want to try avoiding certain food groups, avoid one group at a time; avoid all foods in that group completely for one month. If your eczema is not much better, go back to eating that group and try the same thing with the next suspected group. You may want to talk to a dietician (rather than a nutritionist) for help with this. But I emphasise, dietary exclusion does not always help adults with eczema.
Use your moisturisers every night and morning and after patting yourself dry after a shower or bath. Use something like aqueous cream as a soap substitute. Use your steroid cream liberally on the body and the elidel on the face as directed. You may find an ointment works better around the mouth - ointments are stickier than creams and last longer; you could try 0.5% hydrocortisone ointment twice a day or an antibiotic-steroid ointment often helps for eczema around the mouth.
The macrobiotic diet may help, but it may well not help. I think all the other measures are more likley to help though.
Finally, people like yourself who clearly have bad eczema and who have had lots of advice, which may be conflicting, and have tried lots of things will understandably get fed up and lose confidence in their therapies. Sometimes it is worth starting from the beginning with a new specialist who is interested in eczema and who may have a specialist team of nurses, dieticians, psychologitst etc to help. Go with an open mind, and be prepared to start from the beginning, and don't get disheartened if much of what you get advised is the same as before, beacuse some of it may be new or different. You may need diferent creams and ointments, lifestyle advice, strategies, oral medication or allergy tests.
Talking to other people who have bad eczema, especially those whose control has improved, is terribly important and I would always encourage talking.
Dr Antony Crockett
GP & Hospital Practitioner in the Respiratory Medicine
Certificate in Advanced Study in Allergy

itchyhippy
Posts: 46
Joined: Tue Sep 15, 2009 12:08 am
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by itchyhippy on Thu Dec 09, 2010 8:22 pm

Re: Losing Hope

Hey Kstanton89
I'm 24 and have suffered eczema since I was 3 years old. even now I struggle with eczema and have resigned myself to the fact that i will have this for life. I know the importance of having someone to talk to. at the worst times i need this more than i want advise on creams and treatments - it seems futile to think about trying all the treatments when all you really want is for someone to tell you they know what you're going through. Well.. I do. And I'd be happy to share my stories with you. Do not loose hope. I've been at the point of giving up many times - and its done me no favours.
you can send me a private message on here or i can send you my email address then maybe we can help each other out?
look forward to speaking soon. Don't give up! Keep smiling :D

ullrichab
Posts: 1
Joined: Sun Dec 12, 2010 4:51 pm
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by ullrichab on Sun Dec 12, 2010 5:12 pm

Re: Losing Hope

My Mother suffered with eczema on her hands throughout her life on the Canadian prairies, which has a very dry climate, particularly in winter. She used cortisone cream and I recall her going to bed many nights with the plastic-bag gloves covering her hands. I began to suffer with eczema at aged 18, (together with allergies) but fortunately my eczema was just a patch on the palm of one hand which would practically disappear in the summer but reappear each winter with a vengeance. I used various creams that masked it until getting eczema in and around one of my ears, at which time my Dr. gave me something potent that cured the mess in my ear that had been very bothersome and impossible to get rid of. (Sorry, I don't know what it was). The point of this writing is to pass on to others what the permanent 'cure' appeared to be for me. Over the years my dentist replaced each of my amalgam fillings with non-amalgam ones. The first winter after I no longer had amalgam fillings was a blessing, my eczema patch did not reappear. After the second winter of clear hands (and complete body) I started to wonder what I was doing differently, diet? location? less stress? and finally realized, no amalgam fillings! I have remained clear year around since. I haven't read a lot of the posts here, and perhaps this subject has come up already, but wanted to share my experience in the hopes it may help someone else. Eczema is one of those maladies that can affect quality of life and life is so much more pleasurable without it. Best wishes to all.

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