severe eczema in children

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My 9 yt old granddaughter has severe eczema all over. She is refusing all treatment now because nothing works, even natural stuff. Her skin burns for ages when cream is applied. She is extremely bright and is losing her cheerfulness, saying she wishes she had never been born. The family is in bits with stress, lack of sleep, time off school, constant crying and misery. My daughter who is divorced is close to a serious breakdown. Doctors dont care. Somebody please help us.

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  • Posted

    Oh dear so sad. Not sure if I am allowed to say but has some support groups including BEACON, Eczema UK. I am in UK and a new sufferer though in 60s and I pay to see dermatologist. Main treatment is steroids which I'm trying to avoid now though they were heaven when taking them. Do hope your family find some good support v soon.

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  • Posted

    Has she ever used steroid creams? If so please look into TSW/RSS (topical steroid withdrawal syndrome/red skin syndrome). The fact her skin reacts to anything now is a classic sign of this. And if it is, although recovery can be long, there is hope!

    Sending love and prayers

    God bless

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    • Posted

      Thankyou. Yes many different steroids which no longer work, just burn. I haven't heard of this syndrome but will research it. She is due to see a consultant today and may be admitted for treatment so I will look it up before we go. I value any comments and info I am sent.

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    • Posted

      We've just got back after seeing dermo nurse. She wad not impressed with all the different steroidal creams prescribed by the Dr. Or the fact that my granddaughter wad told to avoid certain foods but not sent to a nutritionist. This has now been rectified and she has given one steroid cream only and one moisturizer. Said the eczema had got out of hand due to poor advice. An appointment to see the nurse every two weeks. She talked more sense than the consultant (who is away on leave otherwise it would have been more creams). The regime is quite specific (if it doesn't work then we are prepared to go private). Here's hoping!

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  • Posted

    Reacting to everything and also burning are classic symptoms I'm afraid. Unfortunately most doctors aren't informed about it, most of us have to go through it ourselves with the support of others with the same condition.

    Yes do look into it if you're able before you go. Dr Rapaport (and possibly ITSAN) are the best resources for the facts. Some patients print Dr Rapaport's white paper and take it to doctors.

    Does your dear granddaughter have other symptoms? Not only skin but systemic?

    If it is TSW/RSS, unfortunately the recommended routes are zero therapy (no steroids of any kind, topical, oral, IV), moisturiser withdrawal (in withdrawal the skin can't tolerate anything on it, moisturisers, oils, lotions, anything), and some find pressure dressings help but this is very individual depending on the ooze and if it sticks to the dressings. Lots of patients rely on cool packs too. Whether bathing helps depends on if the face is affected, for some reason the face (ours was facial and systemic) doesn't like getting wet whereas the rest of body can get helped by bathing, some spending literally 10 hours a day in the bath.

    Feel free to ask any questions, unfortunately we have had to know a lot about this!

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    • Posted

      Hi Bella. Yes she suffers with constipation, asthma and is cold in quite hot weather. Also often has rapid heartbeat. Some nurses I know think she may have coeliac disease and she is waiting for a blood test. My granddaughter. Has had bleach, Epsom baths, aloe Vera, essential oil, salt pipes, as well as elidel, betnovate, hydrocortisone, eumovate, base creams, all to no effect. We are against the steroids as they seem to have made it worse but doctors are in denial.
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    • Posted

      Except for the bleach or salt (we used ACV) we tried all of those. We tried about 40 different things if you can believe!

      Obviously I'm in no position to say they are caused by this, but I can say those are symptoms which can be. The Systemic symptoms can be so vast. Ours included amenorrhea, Dysgeusia, palpations, temperature disregulation, headaches, nausea, diareah, low white count, increased allergies, etc.

      Yes doctors push steroids incessantly. Honestly, they're both lied to about how they work as well as the safety, and they're paid to use them which sounds cynical but it's been admitted time and time again. If you speak with any of the hundreds of thousands of people who have used steroid creams with negative effects, it's understandable why so many patients want them restricted. But at very least doctors shouldn't recommend misusing them like we were and so many people are!

      Let us know how you go!

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    • Posted

      I agree with everything you say. I work with doctors (psychiatric) and they dish out toxic drugs like sweets. The side effects are horrendous but they believe they are doing the right thing. Still, that's another story, but it proves a point. Doctors, however well-intentioned, don't know everything. I had eczema on my face as a young woman and was prescribed betnovate for 10 years until it was realised how damaging it was!

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  • Posted

    Hi diane,

    I'm so sorry about your grand daughter. Severe childhood eczema is extremely tough. I too have severe eczema and it was even worse when I was a child. I have a couple of recommendations that have worked for me in the past and may work for your granddaughter, but to be honest everyone is different and it's a bit trial and error.There are many aspects to childhood eczema both the skin itself, pain, anxiety from being so itchy and self estem.

    For skin, I know alot of people believe that steriods cause problems I have used steriod creams all my life and never had a problem (i'm not saying they are wrong, I'm speaking of my personal experience). If a child is in pain and in a flare up, the only solution is to stop the flare up and maintain. This means steriod creams at a fairly low dose, for this she must go to a doctor. If the doctor(s) doesn't care, find another and advocate for her. It may take some time but sooner or later a doctor will care. Also, bathes in aveno oatmeal bath help take the itch away and soften the skin, after the bath apply vaseline (the bath will take away the burning of the cream if you apply quickly after getting out of the tub).

    Self esteem is a big problem with kids with severe eczema. Find something she is interested in to boost her esteem. Something that buids confidence and a good reminder that beauty comes from the inside really helps too. Try to keep her busy with crafts or something creative to get her mind off her skin.

    If there is an eczema support group it would help her tremendously. She's going to need to learn about coping with regular stress and eczema stress which is alot to ask of a kid, but she will learn.

    I wish your grandaughter all the best and hope your family finds some help.

    All the best,

    Oxygen

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    • Posted

      Re oats, the poster mentioned a question about celiac. Most celiacs can't tolerate oats even gluten free ones. Also, although it wasn't mentioned in the op, it's worth noting things like nickel allergy prevent using or consuming oats. One of the most common cause of Excema or rashes is nickel allergy or systemic nickel allergy disease

      Most importantly, you mention treating a flair, yet don't mention finding the route cause of the Excema or skin condition. Unfortunately treating it isn't the best way of dealing with the problem, diagnosing or identifying the causes are.

      Hope there help. So sorry to hear all you've been through.

      God bless

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    • Posted

      I have asked many people in the field but there is no one answer. It is so complex. House dust mites is a big factor in our case. The area where you live because of certain plants I have been told. It is a minefield, one we cant seem to fathom. It's all about management, treatment depends on severity. Keeping skin moisturised is the most important part of treatment which I know from experience is very draining for parents if the eczema covers most of the body. Correct use of steroids plays a part. Alternative treatment is useful when the eczema dies down. Overall, every sufferer is different. We were lucky to find a nurse who cared enough to give us a strict routine, which is tedious but very effective

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