..to think I'm a bad parent ?

[Iamback234]

Hey,

So I have a 6 year old DD who has very severe eczema, especially on her hands and neck. Passengers stare and gawp at her, I've had several people come up to me to dismay how terrible her hands look, that it looks really bad and question what I'm doing about it ? ( I often get the sort of same remarks when I take her to the doctors).

What they don't know is that I've put DD on countless diets, dairy free, wheat free to help beat the eczema ( she does have actual allergens to this but they are not helping, though she is still on a wheat and dairy free diet), she has been seen by three dermatologist and is awaiting another appointment. I have tried various ointments and creams, we keep persisting with steroid creams though we don't use that often as they thin the skin.


I just feel so down about it, I do hate the way the eczema looks and feels on her skin but it does not help that people who don't know me point this out. Also, I have resorted telling DD to put her hands in her pocket ( I know, it's bad) as that's where the eczema is worse and people often look at them.

Am I not really doing enough to combat her eczema or am I just a bad parent that her eczema should of been sorted out long ago ?

[LegoNinjago]

Lamback234 I don't know where to start

Start here
itsan.org

[Pookalooks]

Moisturise with ointment several times a day. Epaderm works for us - but only in the thick ointment tub - DD(6) cries that any cream /lotion stings. You could also ask for something called emollin, which is a spray they can use at school which doesn't require touching. My daughter is now on methotrexate as nothing else worked. ot a cure as that doesn't exist, but now only patches we can manage. What I learned: use the strongest steroids and hit any patches as soon as the skin gets rough. apply generously until gone - then moisturise religiously. hands are hard - we use dermovate, with Elocon on neck and arms. bleach baths - we use dettol but you can use motion as well - this made a huge difference especially when flaring. keep going back to your GP until they refer you to an eczema clinic. You are not a bad parent!

[JedBartlet]

You absolutely are not a bad parent. I'm so sorry you're being made to feel that way. Not going to offer any more advice but have you read 'This Must Be The Place' by Maggie O'Farrell? There's a child with severe eczema in that and I think she writes really beautifully and sensitively about the struggle from both the child and parent's point of view on how tough it can be. Might be helpful for you to feel you're not alone! I believe the author has a daughter with the condition herself so it is written from a point of experience. Good luck and I really hope things improve for you both x

[miserableandinpain]

Also we use sanex in the bath. X

[contractor6]

My ezcema flare ups wetr caused by stress, could she be bothered by something?

[thismumismad]

Sls or sles sodium lauryl sulphate and sodium laureth sulphate are both detergents and some people are very sensitive to it. Just a day of using handwash will make the skin of my hands crack. You'll find it in almost anything that bubbles that goes on your skin. Last time I used a normal shampoo, a baby shampoo, my cheeks had a nasty reaction to it. Swartzkopf kids have a shampoo and conditioner plus a shampoo and bodywash that is sulphate free and I can definitely recommend these. If you have a local person that makes handmade soap, ask about pure castille soap made from only olive oil, very similar to Aleppo soap mentioned earlier which has laurel oil in it too. I made a body butter using coconut oil along with Shea and cocoa butter. Thus is the only moisturiser that I use now and it will work on fungal infections too. OP please PM me if you want to make this for yourself and I'll take too through it all.

[YetAnotherSpartacus]

Miserable - yes - I've already ruled out the Shampoo because of the SLSs (sadly). I'll try the cream, but I'm wary of perfumes and Lush do overuse them.

I'll add one other thing - I use various oil based bath treatments, but I always put Vitamin C power in first to neutralise the chlorine. If you want to be especially careful you can also put this in your washing machine. It does work!

[CazY777]

You're not a bad parent at all, people can be so bloody insensitive about skin conditions.

Things that have worked for me and my DD (apologies if you've already tried these things)
Daily baths in oilatum junior, good 20 min soak
Liberal application of emollient cream on hands and thin cotton gloves kept on overnight - you have to literally pile the stuff on so it soaks in.
Repeated trips to the gp to get stronger steroid creams. I find this is the only thing that stops the terrible itching. Apply it very thinly exactly how they instruct you to and keep going even after its not visible anymore. Don't put it on when using cotton gloves mentioned above.
Avoid all soaps (except sensitive), washing up liquid, use only non-bio fairy washing liquid and be very careful which suncreams you use.

Hope you get some better help from the specialist.

[ChrisYoungFuckingRocks]

Three words: Boudreaux's Butt Paste

After my daughter's stoma was reversed she has such bad nappy rash her skin was cracked and bleeding. This stuff cleared it up in hours! I have recommended this to people with very bad psoriasis and it has helped clear it up. I'm obviously not guaranteeing it will work, but it's definitely worth a try .

"Butt Paste is recommended by paediatricians and used in nursing homes to help prevent and treat bed sores. It is also being used to treat burns and on the skin of patients who have had radiation treatment.

Other conditions that have been healed by Butt Paste include eczema, psoriasis, haemorrhoids, shingles, cold sores and acne. Many American sports teams use it to treat chafing and athlete's foot."

You can only buy it online.

[alltogethernow123]

One of my very dearest friends has terrible eczema. We've been friends since primary school(now in our 30s) and I clearly remember shouting at a bully who wouldn't hold her hand. I gave that girl what for because she was so cruel to my friend.

Some people will always be dicks. Eczema is what it is. Anyone with half a brain can see that it's a painful skin condition - not to be sneered at.

Ignore the arse holes OP, you're a great parent

[MotherKat]

You are not a bad mother.
I am an adult eczema sufferer, dream cream for hands and body, determinator from Bimble for face, kimchi and drinking lots and lots of water, and only bathing twice a week using either butterball bath ballistic or a bath melt.

[miserableandinpain]

Spartacus. We tried lush for a while. Just make sure you check for perfumes. A couple helped a bit. But didnt clear it up. We used dream cream. The self preserving one

[YetAnotherSpartacus]

What Shovetheholly said "Next time it happens, I would just say "Yes, everyone always asks me about this, with the assumption that I'm a neglectful parent. I'm not, we've tried a huge range of remedies, and nothing so far has worked. Having people raising what is essentially a private matter in public like this is very undermining". And walk away"

Having said that I am selfishly mining this thread for all the info I can find ...
Things that have worked for me include;

• Bathing in Scottish water (from the Highlands)
  
• Filters for chlorine when not in the Highlands (most of the time, sadly)
  
• swimming in chlorinated water when sores are weepy (obviously should only be done on medical advice)
  
• probiotics
  
• light steroidal creams
  
• biological washing power
  
• avoiding all cleansers and shampoos with SLSs
  
• adding vitamin c to water to neutralise chlorine
  

I'm off to look for those Lush products. Haven't been in Lush for ages because the aggressive salespeople drive me nuts ...

[miserableandinpain]

Sorry for spelling mistakes. Insomnia!

[miserableandinpain]

Also i get how you feel. The mums at the toddler grouo i go to would bombard me with advice. And i know i just gave you some but ds was covered in it. The only oart of his body not affected was the genital area where as these mums kids had a patch on their elbows!

Anyways one day they all suggested i stop breastfeeding as he was obviously allregic to my milk i burst into tears and left. I had lost so much weight illiminating things from my diet thinking this but actually it did nothing. So i just made myself ill and found it harder to cope. Breast milk was the only thing he wanted so i wasnt taking it away. We only stopped breastfeeding last month! He is 2.5 years now and we only stopped as i am exoecting new baby in a month or so.

So no yoi are not a bad parent. The fact you care so much and are so upset shows what a good parent you are! I keep pictures of my sons eczema to remind myself of how lucky we are now and how strong we were at the time.

Big hugs. You are amazing. Xx

[msannabella]

You are not a bad mother. At that age I had bad eczema on my cheeks, arms and legs. We never found anything to get rid of it and i had it well into my teens. (Although that was 80s/90s so probably better treatments now) People used to stop my mum and do the same thing. Must have been quite hard for her but she managed to do a good job shielding me from it and I think that helped my confidence about it. Please don't teach your daughter that it's something to hide away or she'll get so self conscious about it.

[miserableandinpain]

Where in the uk are you?

We ended up takung our son to a soecialist in london Dr Fox. He was amazing. It was private but worth the money. Ds had eczema all over his body for a year. Gp wouldnt do anything but keep giving him moisturiser with parafin in which i swear he is allergic too and lanolin.

So we went to see dr fox. He did an allergy test there and then. Hd was allergic to egg but only slightly. Not enough to cause eczema. So he gave us some steroid cream one fot the body one for the face. Yes i know steroids are bad. Or so everyine thinks. But he explained the sterpid cream the gp gives, normally fucidin is so milkd that you could bath daily in it and it WILL NOT thin the skin as the eczema is so thick anyway. He said any damage caused by the semteroid cream is nothing compared to the damage done by the eczema and scratching.

He prescribed mometasone furoate 0.1% w/w cream once a day thinly on the body and primecrolimus elidel 10 mg/g cream 2 times a day for the face. In 3 days his eczema was gone!

For the first time in his life he didnt have eczema. Didnt cry all night in pain. Did scratch so he bled. Started eating. He started growing better and started getting his teeth properly.

We now get it on repest prescription from the go when he gets a flare up which isnt very often. We use it maybe once a month now.

He looked like a burns victim. Was being bathed 3 times a day even 3am. Just to clean the blood. Everyone was shocked how good he looked. I wish i had done it earlier instead of listening to the gos and keeo putting their cheap moisturisers on him.

I had tried all natural methods i could find. Changed my diet and his as he was breast fed .

DR FOX. HARLEY STREET. please consider it.

X

[justinelibertine]

You are definitely NOT a bad mother. You are trying all you can to make your DD more comfortable.

People who stare or ask are ignorant, and mostly curious and it comes out wrong.

Being a bad mother would be completely ignoring the situation and letting it get worse. Like my own mother, I was born with a cleft lip. After rejecting me for 10 days she decided she'd ignore everything, including any mental health therapy which might have been open to me. Oh, but she does remind me often how embarrassed she is of me. Last week she took me aside to tell me that she was so ashamed of me when relatives came to see me as a baby that she hid upstairs until they'd gone.

Keep going, OP. Do everything you can to help you DD and most of all make her believe that excema is nothing to be ashamed of and she is as good as everyone else.

[Astoria7974]

If it's due to an egg allergen then she'll eventually grow out of it as most kids with egg allergies do - I know it's hard to do, but just stop complex diets etc and continue with medical treatment.

[ProfessionalPirate]

Ignore feckitt it's a troll. Don't understand why HQ haven't banned yet.

[shovetheholly]

I love the fact that the OP says that the endless advice is making her feel inadequate, so everybody piles in to reassure her.... with more advice.

While I appreciate that this is all very well-intentioned, from people who have been there, done that, the essence of the problem is not the eczema itself but the way that the OP is feeling about this assumption that is constantly being made that her DD is suffering some kind of neglect. Having to justify yourself constantly in public is very difficult, draining, and liable to make you feel very socially defensive.

Next time it happens, I would just say "Yes, everyone always asks me about this, with the assumption that I'm a neglectful parent. I'm not, we've tried a huge range of remedies, and nothing so far has worked. Having people raising what is essentially a private matter in public like this is very undermining". And walk away.

[Mummyoflittledragon]

Sorry I'm going to add to the mix of confusion.

I'm looking at inside out as opposed to topical.

I agree gut bacteria is a high factor in causing this reaction. So definitely probiotics. I give dd Bimuno powder, which has a good though not exhaustive number of different strains. It's great because they come in caplets and you can sprinkle and mix it in foods - I give dd natural yoghurt - so undetectable.

Secondly if her eczema is light reactive and gets better in the summer, try giving vitamin d3 supplements - d3 is a hormone we synthesise with the sun. Nutri do a liquid form (with k2, which is better) so again easily disguisable in food.

Thirdly to help with the gut bacteria, give a supplement with all the B vitamins in it. These will be low and you need to give these for at least 3 months. I don't have a liquid form for this.

Check out drgominak.com. He's got info on there about dosages of vit d3.

But please don't get your dd to hide her hands. Better to ignore the people and explain to her that they don't understand and she's beautiful the way she is. They won't be looking at her to be hurtful or judge you so please get this out of your head.

[BalloonSlayer]

Do they still do wet wrap bandages these days?

They made a massive difference to my son but you need the steroid prescribed specially because it must be a lot weaker than when you just put it on bare skin.

My DS turned a corner when we started these when he was admitted to hospital - also because the hospital could see for themselves that he was allergic to creams that apparently "no one is ever allergic to" eg diprobase and aqueous cream. Things that worked for other people did nothing for him. Oilatum junior helped marvellously for him, yet the adult Oilatum cream - nope, (you'd think it would be more or less the same, wouldn't you?), E45 - did nothing, etc etc.

Is there a children's asthma/eczema/allergy nurse in your area? She/he may be your best bet for practical help.

Sympathy it's absolutely horrible.

[Robstersgirl]

I think it's wrong for her to have to hide it. Get some white cotton gloves she can wear with hydromol layered inside. Hides her hands and treats them.

[ComeOnSpring]

Sounds like you are trying everything. People are amazing. They just shouldn't do that. I hope its not in your childs earshot. I think you should think of a retort to cut the conversation dead and walk away.
I would say, the sea is amazing for eczema and the sun and the fresh air, so hands in pockets might make them worse..
With eczema so many things can cause the reaction. I assume you've tried non biological washing powder. Homeopathy tests can find random things that cause reactions; peas or tomatoes, which are acidic can sometimes be a cause (along with other things). All I can say is the majority grow out of it, but it can take a while. Keep going and you will find a better formula which will ease it for your daughter.