Eczema mums-please help

[eczemamummy]

Posting here for a boost and some encouragement from eczema mums who have come out the other side!

We're just at the beginning of our eczema journey with our six month old who has been struggling since about four months. The GPs have been fantastic, we've had an urgent referral to dermatology, and we have some allergy testing booked in for later in the week. So, everything is 'in hand' so to speak, but I'm on a real downer today after another flare.

I won't go in to the ins and outs of what we've tried etc as I realise every child is different and what has worked for others might not work for mine, but I'm feeling so hopeless and powerless with the unpredictability and inconsistency of it all, not to mention the labour intensive nature of treatment etc and the mental load of it all.

I'm feeling really overwhelmed at the idea of having years and years of this ahead of us and am feeling very down and guilty with it all today. I've come on here today as I REALLY need some kind and compassionate words of wisdom and reassurance that it might get better. I know it might not and he might struggle forever but I really can't think like that right now! I need to hear from people who really struggled with baby eczema who are now out the other side! TIA X

Aveeno and fucibet cream when you get a bad spell. It does get better as they get older. Sunlight always helps. Winter always seems worse. It is just a case of getting into a routine of moisturising. If appropriate we found eliminating milk and wheat helped massively. It all feels very much a case of trial and error at first. It does get better.

Thank you @Dangermouse80 x in your case was there a milk or wheat allergy or intolerance? Or do you think it's just a case of those things are generally just inflammatory and therefore not ideal for people with eczema? I'm almost hoping the testing comes back that he has CMPA as that might at least explain the flares and give us something else to try x

My boy suffered for most of his first year. He has non ige allergies to soya and dairy, but the dermatologist was adamant it wasn't a non-ige allergy causing it. I ignored them, decided to pull wheat from his diet and the eczmea was gone in a week, this is after every cream imaginable for months on end. Told the consultant who just said it must be a lucky coincidence. If you suspect a food allergen I'd trial elimination (non-ige won't show up on allergy tests so it's the only way).

Not a eczema mum but I have it myself. I put dermol cream into my bath when have flare ups and it is so soothing.

First thing I thought of was any allergies ?

A lots of babies grow out of it. If it’s related to an allergy, then you could be past it really quickly.

Once you’re under dermatology, it’s a whole different experience. I lost my mind before then. Loads of GPs appointments, and just feeling like I was carrying the weight of the world with me. Like I could never emmoliate enough 😂

But since we’re under hospital care, it’s been amazing. Changed everything. Felt supported, clear pathways explained. So much information and knowledge.

We use cetraben 2-3 times a day and mometezone on inflamed patches. LO is 18 months and we've been doing this for a few months now. I hope they grow out of it but it's not the worst affliction a child can have so try not to let it get you down. It's one of those things you just have to learn to manage.

Also it is always worse if they are not well, we find.

If your breastfeeding breast milk is amazing for eczema, mine is horrific in winter so I just rub a bit of expressed milk on to the areas before bed

Aveeno is fab. We were told to use the adult range rather than the child by the GP and it's helped massively

My 5 year old has had it since he was a tiny tiny baby. He is still under dermatology now and has in the past had to be wrapped head to toe in bandages with a strong rehydration cream underneath by the nurses, which stays on for about 3-5 days but the difference afterwards is amazing. He doesn't have annnnny problems in the summer now, probably the past two years, in fact I was fairly confident he had finally outgrown it until last week when it has started up again. He calls it his 'scritchies' and knows his own little routine of creams after bathing and before gettin dressed ( I put it on for him, he just likes to remind me - like I could forget!!)
Honestly it just becomes part of your routine. Flare ups are awful, but once you find the right steroids and moisuturisers you will feel much more confident about dealing with it.

We tried EVERYTHING, under dermatology at Great Ormond Street. It was allergies. Dermatology would not look into that at all, so we had to investigate that separately.

There are NICE guidelines around babies who need eczema creams and how they should be referred for allergy testing, so it's good you're looking at that as there's a strong correlation.

My DD’s eczema wasn’t the worst but it was head to toe, cracked, bleeding in places. I found it really distressing to look at. I tried all the emollients from the GP but they didn’t help. Cerave moisturising cream was amazing. I used it multiple times the first day and the difference it made was incredible! Like two different babies. I still use it every day all over her body (she’s nearly three) and it keeps the eczema in check. Small amounts of steroid if she gets any patches. I would definitely try some different creams and see what helps your child’s skin.

I might add, certain fabrics really affect him. Wooly knitted materials and also fleecey type (fleecey pjs etc), he has to wear long sleeved t-shirts or vests underneath so it isn't the heat off them but rather the material irritating his skin.
Having the radiators on definitely makes my LBs worse but its too cold not to so back to excessive moisturising we go!

We really struggled with our DS and it was allergies which he still has. He's 7 now and I can honestly say the eczema doesn't affect our lives. He has to have cream day and night and it does flare up in the winter. I promise you there is light at the end of the tunnel. I've been where you are and I know it's totally overwhelming. I would cry daily over my poor little boy scratching himself until he bled. It was a constant battle between bleeding, weeping and dry skin. We got a very good consultant when he had his first anaphylactic reaction and since then have been managed well. Feel free to pm me if you need advice or support.

DH has awful eczema. Had it all his life but it varies when it was worse or better. Allergy test as an adult just blew up so it was inconclusive.
Routine of applying dark blue aveeno 2-3 times a day, using sensitive shower gel etc. works for him. Oilatum baths when he has a flare up. He has also had oat baths which he found really soothing. Put a half cup of oats in a muslin and use like a bath bomb. Oats are good for reducing inflammation.
I know it’s awful watching them suffer, but it will get better!

My 9 year old suffers he first had it at 9 months and it seemed to gradually get worse we had it under control for a few years with hydrocortisone but the last couple we have had to keep getting Eumovate help keep it under control. The last flare up was awful as he got it on his face and neck where he doesn't usually get it. We ended up seeing a trainee doctor and he was amazing much more thorough. We've taken home a shampoo and body wash, more Eumovate a steroid alternative for his face and a big tub of oat based emollient. I feel like they quite often say put it on thickly for a week and then ease off but don't really prescribe enough to last and I have to keep taking him back. So far so good and he's looking better, at our last appointment they talked about light therapy if it doesn't improve. I'm hoping it might get better when he's a teenager and his skins more oily but I think as it's hereditary and his nan is still suffering at 65 it's not likely.

@Beanbagtrap thank you. So does your little one have a wheat allergy? Sorry this is all new to me. I'll have a look in to the difference between ige and non ige allergies x

Thank you so much everyone. Such kind and validating replies. I feel very lucky that the GPs have been amazing. They took pictures and sent them to dermatology and they emailed back with a plan and requested the GP make an urgent referral, so it feels like we're being well taken care of which I know is half the battle so I feel very lucky.

He's on formula and only just this week started trying afew veggies, so the only typical allergens he's been exposed to so far in terms of food are cows milk and there's also fish oil in the formula. He's had no exposure to things like wheat etc yet. We've changed washing powder and stopped wearing fragrances.

I'm pretty sure he's got a CMPA or at least an intolerance for it to be this severe x I'm kind of hoping so as then it can be quickly helped! X

I had horrific dermatitis on my hands. Constantly cracked and bleeding and infected. I'd used all the creams from doctors. I used Childs farm and it improved. A year later it's gone completely

I was where you are back in the early spring OP. Our baby (now 1) had angry eczema all over her, there was nowhere it didn’t affect and only strong steroids kept it under control. We’ve been with dermatology at our local children’s hospital since July and things are totally different now. The most recent medicine combination has made the world of difference and she’s on her way to being steroid cream free for the first time since January. We’ve done everything dermatology has told us to do and it’s worked :-)

I remember my DS having a bad flare around six - 10 months. His skin was cracked and sore from top to toe. Every nappy change involved dunking him in a mixture of warm water and olive oil. I sewed up the sleeves of his sleep-suits to stop him scratching and lathered him in emoillient and steroid creams.

It was very tiring, very dispiriting and very upsetting to see his discomfort. But it turned out that was the worst flare he ever had. He is now 15 and for a very long time his eczema has just been a case of the odd dry patch.

We scrapped using fabric softener, only used non-biological washing powder, and dressed him in soft cotton. New clothes were washed thoroughly before he wore them. I recommend the clothes from Eczema Clothing (used to be known as Cotton Comfort). Oh, and we replaced the paper liners in his cloth nappies with fleece ones.

What seemed to put an end to that flare was a couple of weeks of sunshine on a Cornish beach. Even though he was covered up to protect him from the sun, his skin healed beautifully and his eczema was never so bad again.

I hope your DC is over this flare soon.

I'm so glad to hear how it's turned around for people. I can totally relate to everything people are saying about how they felt in the early days.

Will try and stay positive and I'm looking forward to our holiday abroad in spring even more now! X

I agree wholeheartedly. DS, now 11, suffered from his toddler years, though it was intermittent. Then it got really bad when he was about 7. His poor arms looked like tree bark with all the striations. We finally got a referral to hospital dermatologist and they were amazing. As you say, they carefully explained the way to manage the different creams, and exactly when to use them and for how long.

I'd say he's barely had a flare up for 18 months now. Dermol in the shower and Epaderm as emollient seem to mainly keep it at bay. There is hope OP; good luck.

I’ve had eczema since I was a baby but I have long periods of completely fine/ healed/ non itchy skin. I get bad flare ups when I neglect my skin and start itching and then continue not looking after my skin for whatever reason.
I don’t know what you’re using but When I have a flare up I use a thin layer every night of fucibet ( fabulous stuff) and wet wrap with pb7 bandages ( these give me so much relief). If I do this every night for a week my skin recovers and then I can stay on top of it by being careful what I use to wash with.