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Original poster

Excema. I'm not alone am I?

55 replies

Harrymetsally123 · 05/03/2016 23:03

I know I'm not and I know my son isn't the only but it sure can feel like it sometimes. I know no one in real life with excema like his. Mine was never as bad.

I have one friend who knows it all and is so supportive, but I still feel alone some nights. I want to take it away, but I can't. I want to hug him but it hurts him if I do.

Can anyone relate?

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Original poster
Harrymetsally123 · 05/03/2016 23:04

Reading that I sound ridiculous

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ShesGotLionsInHerHeart · 05/03/2016 23:07

I was born with it, and had some awful times growing up. If it helps, it's basically gone now that I'm an adult.

It's shit though. I'd recommend Aveeno and Burts Bees products. All of the very heavy emollients, diprobase etc given by the doctors over the years made my skin so much worse; it was hard hard work to get them to as knowledge that.

Have a hug. Nothing worse than seeing your child in pain or miserable.

Original poster
Harrymetsally123 · 05/03/2016 23:10

I'm glad you have said that my sons doctors just don't seem to understand that. They won't even acknowledge it is bad.

Haven't had burts bees products - any in particular? Aveeno? That is oat based one? Made it worse.

Going to check out burts bees now

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duckfilledfattypuss · 05/03/2016 23:13

It is horrible. I agree with ShesGotLionsInHerHeart about using Aveeno over the thicker ointments. My son was lucky in that he grew out of it but he had some horrible times. We used to have the heating on low and loose clothing on him so he didn't get too sweaty.

Best wishes to you both Flowers

Original poster
Harrymetsally123 · 05/03/2016 23:16

Thank you, yes I cannot have heating on at all and loose clothing. It's just so hard some days. I feel powerless.
Thank you for your wishes

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ShesGotLionsInHerHeart · 05/03/2016 23:22

One GP actually refused to refer me for light treatment (which is all that worked at certain points) as I hadn't followed her 'skincare regime.'

The fact that what she prescribed left me crippled in pain and unable to go to work/shower/sleep without sleeping tablets was of no interest apparently.

Try the Baby Bee range; that's very gentle.

duckfilledfattypuss · 05/03/2016 23:22

Sorry xposted. Have you tried any dietary changes (for you if breastfeeding or for him if he's older)? One of my friends swears by cetraben for her LO. I guess it's just trial and error, and keep badgering your GP.

It's frustrating but he's got you on his side at least.

Sallyhasleftthebuilding · 05/03/2016 23:23

Get an aloe Vera plant - natural soothing juice from the leaves DS eczema disappeared with four days of treatment - worth a try

Onynx · 05/03/2016 23:23

It is awful. My DS has scars from a recent bad flare up. It looks dreadful, really bad. Our guy is starting swimming with school soon and I feel so sorry for him.

Original poster
Harrymetsally123 · 05/03/2016 23:29

Duck - he's 5 now but yes his diet was very restricted from 9 months to 3.5 years, last 2 years I've introduced things slowly and it seems to just be dairy but he can tolerate small amounts. It's mainly airborne allergens now which I cannot control which makes me feel like a loser cos I can't help.

My gp is ridiculous I've had 3 referrals to 3 different hospitals who have all failed him. I have had to fight for the little help he has had.

Onynx - I know what u mean, my son has white patches on his face and arms - doctors don't know if relevant to excema or not only time will tell but I feel for him.
It doesn't phase him a lot of the time but when he's in pain he's a different child it's so upsetting to see.

He's becoming more self conscious - won't get changed for pe, and doesn't like wearing his bandages anymore.

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Original poster
Harrymetsally123 · 05/03/2016 23:30

Sally - what do u do with the plant (really stupid question) I'll try anything!

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Original poster
Harrymetsally123 · 05/03/2016 23:31

She - my experience with these doctors and my son is terrible And will haunt me. I have had to fight so hard for referrals and creams and recommendations I shouldn't have had to. (I am not generalising I'm aware I have prob just had bad luck with the professionals I have encountered)

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ShesGotLionsInHerHeart · 05/03/2016 23:42

I hear you; I could name ONE doctor who I think really looked past the obvious to try to get me more help than the standard 'here's some steroid cream' and she was a student.

Sallyhasleftthebuilding · 05/03/2016 23:42

Take a leaf and crush it - out comes juice - rub it on skin 3/4 times a day

Health food shops sell lovely aloe sun cream - expensive but beautiful skin all summer

Aloe soap and shampoo help too

I am not a rep!!! Just tried and tested different methods

3 kids no eczema

Original poster
Harrymetsally123 · 05/03/2016 23:46

Thank you Sally.

She- yes i agree. I just don't know what to do anymore. I keep researching, I keep doing what I am meant to but nothing changes. It's waring.

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Wolfiefan · 05/03/2016 23:54

Eczema is horrid. Trying different creams and oats in the bath and all the miracle Aveeno etc that everyone says cured their kids but just makes yours worse.
Grrrr!
Flowers

INeedNewShoes · 05/03/2016 23:54

I swear by Eucerin Lotion 10%.

Over a period of twenty years I tried everything the doctors could think of to prescribe, but things suddenly took a turn for the better when my mum found Eucerin for me to try. It was a revelation to apply this cream and find that a couple of hours later my skin was not already flaking and sore (in fact it keeps my skin comfortable for 24 hours +).

I agree that the emulsifying type creams are no good at all.

Cotton gloves at night with Neutrogena hand cream saves my hands from cracked knuckles/joints.

On top of that, I would try these things and see if they help:

  • put all of his clothes on an extra rinse cycle in the washing machine, and reduce the amount of non-bio washing powder (I use half the stated amount and it still gets clothes clean)
  • make sure his bedding is 100% cotton
  • any clothing that will touch his skin 100% cotton (or 95%)
  • don't bath him too often (if I shower every day my skin gets worse very quickly)
  • try and identify any foods that make it worse. A key one for me was soya but everyone's different and it takes a lot of trial and error to work it out
Original poster
Harrymetsally123 · 06/03/2016 00:01

Thank you for your thoughts and advice, I'm going to pop to shops and get some things tomorrow.

I am yet to find a washing powder that he doesn't react to (just use half recommended dosage of the least worst)

It's the constant trial and error that I find difficult.

Also, has anyone found something that seemed to help but after weeks/months it's like u build up a resistance and it stops working - I find this regularly with my son and products

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INeedNewShoes · 06/03/2016 00:11

I have found in the past that products become less effective over time, but for some reason Eucerin is different. I've been using it for 13 years now and it's as effective as it was on day one. It's different to the more standard lotions because of the urea content but in all honesty I don't really understand what it is about it that makes it more effective for me than the others.

I think one of the tricky things about eczema is that everyone is so different, so what works wonderfully for one person/child doesn't work for the next.

It's just trial and error until you get it right.

I react to all washing powders apart from Persil non-bio but then I have a friend who is allergic to Persil and fine with everything else.

Original poster
Harrymetsally123 · 06/03/2016 00:15

I have always assumed persil would b a high allergen but I do t know why, worth a try I guess, can't do more harm.

I'm glad u have said that I occasionally feel i make this stuff up in my confusion and upset and lack of sleep. And lack of doctors helping also makes me feel inadequate. I've recently looked into making my own products but don't know how affective this would be.

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Original poster
Harrymetsally123 · 06/03/2016 00:16

Excema is a nightmare because it follows no pattern from person to person it is entirely different. I believe this is why doctors get frustrated with patients, there's so many products so many sufferers be it mild moderate or severe it's a mine field

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RedOnHerHedd · 06/03/2016 00:20

If you'll try anything, Google "urine therapy for eczema" my DS2 had it so bad when he was little that it would bleed. I tried everything the doctor would give me and in the end I was so desperate I googled natural remedies and came across urine therapy. I know it doesn't sound the greatest, but urine is sterile.

We used terry towelling nappies on the DC and whenever he had a wet nappy, I would take it off him and whilst it was still warm I would wipe his skin with it. He didn't smell, as baby urine doesn't. And within 3 days it was noticeably better and within 2 weeks it was completely gone.

Took him back to the GP and she was amazed and said that it's the urea that works wonders for skin.

Obviously it was easy enough for us to do because he was little and didn't know we were rubbing his wee into his skin, and it was easy because it was there already in his cloth nappy.

When I mentioned it to my mum, she told me that my man used to do it to all of us when we were were in nappies, and my mum swears that that's the reason that we all have such good skin.

Original poster
Harrymetsally123 · 06/03/2016 00:24

Really? Wow I never would've guessed that

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Original poster
Harrymetsally123 · 06/03/2016 00:24

That's why the eucerin works then?

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RedOnHerHedd · 06/03/2016 00:45

Yes, eucerin is high on urea. I think they used to use horse pee as a base for urea in skin creams, but I think they make it artificially now. I could be wrong though, they may still use horse pee. But honestly, it works like a miracle!

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