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

Thank you. There's so much to learn! X

FYI I had been using mometezone on my son for a long time, after being given it by the allergy clinic consultant, until I finally saw a dermatologist (consultant) who said this was not an appropriate steroid at all (I can't actually remember why, I think she said because it is supposed to be used only when there is an infection as well). My son had been saying it burned when I put it on and the consultant said it could indeed feel like that if used when it shouldn't be, and that I needed to stop using it straight away. Just wanted to let you know in case you were also given it by an allergy doctor rather than a dermatologist.

Can I ask what medicines she is using? I didn't think there was any treatment for eczema other than steroids? That's what the dermatologists always say to us!

If food enters the skin through broken skin barrier it could cause your child to become allergic to that food.

Please check all moisturiser ingredients carefully and don't use anything with a food base (like oat) it really is not worth it.

Are you breast feeding? My DC's eczema went as soon as I cut eggs from my diet as she is allergic to them.

@Lilgamesh2 thank you. No we're using formula which only contains milk and fish oil in terms of typical allergens x

If the eczema is on his face then I think you should consider spoon feeding him when you're introducing him to food because with BLW it smears all over their face and can aggravate it.

I know this from past experience unfortunately. My DC now needs to use a barrier cream at meals and has a tonne of allergies.

However, her eczema is basically non existent now we know the triggers.

It does get better! My DS struggled SO much with it when he was a baby, practically his entire body was covered, especially under his chin and the backs of his knees. We went through (what felt like!) every cream there ever was to try and help. Turned out to be a lactose allergy which was making it worse, and then once we cut that all we needed was Child's Farm. But he's now nearly 2 and is absolutely fine, he gets one tiny patch on his collarbone and that's it. It is a nightmare in the early days, you feel like you're constantly greasy from the lotions etc all the time, but hopefully your little one will get better too 🤞🏼

Yes he has a non-ige allergy, these don't show up on tests so the only way you can tell is to exclude the food for 4-6 weeks, see if symptoms improve and then 'challenge' the allergy by consuming a high level of it for a few days and see if symptoms return. As a pp said, dermatology refused to consider allergies, but it was remarkable the turn around on him..patches that had plagued us for YEARS suddenly just disappeared.
He actually has multiple allergies (dairy and soya too) so we have to exclude them all.

If your boy is on formula then I'd ask for a dairy free one (not just a hydrolysed one but properly dairy free) and see if he improves. I've heard they're horrible though so you may need to spend a few weeks mixing formulas to get him to take it.

Heya. By medicines, I meant treatments, including steroids. She was put on a plan of three steroids to be stepped down over the course of a couple of months; firstly she was wrapped up for a week, then used a strong steroid for 2 weeks, then a medium one for a week, now a protopic for 6 weeks twice a day, to be dropped to twice a week as a maintenance dose. She has Aveeno all over her a couple of times a day and wears ‘skinnies’ under her pyjamas at night. She has a sort shower using derma cream as a soap substitute each evening and has medicated shampoo twice a week. We also use non bio powder only in the washing machine, including for our clothes.

I suppose there’s a lot going on to manage it, but she’s almost eczema free now for the first time since she was around 8 weeks.

Hello,

My daughter (3.5) has had eczema since she was around 4 weeks old.

Finding the right emollient/moisturiser is a bit of trial and error and if you're under the care of GP and progress to special interest GP or dermatology consultant they will have their own views on what works, plus there are first line treatments (usually the cheaper ones).

We went through E45, aveeno, Diprobase, cetraben (cream and emollient), hydromol, 50:50, and now are on AproDerm. It's a bit of a mine field as everyones skin reacts differently.

Likewise, other required treatments, such as steroids and immunosuppressants will be dependent on how the eczema progresses. Lots of children will have mild symptoms that get better with just keeping the skin moisturised - and I'd recommend doing this throughout the day, every nappy change, before eating food, after any wiping them down etc, the more often the better especially in winter.

Some people are able to find triggers, such as allergens including foods, but you might not always be able to figure out triggers.

I'd recommend looking at washing powder you use, not using any fabric softeners or perfumed things. Clothing can be an irritant so using natural fibres like cotton, silk or bamboo is recommended for skin. You can get some types of clothing on prescription too but it's either skinnies or comfifast garments (those are the only ones I'm aware of as that's what we've had before).

One thing that massively helped me was the eos.org.uk/ website and support group they have on Facebook. I'd really recommend looking at joining as there are parents from all over who offer advice and speak about their own children's eczema.

Scratchsleeves and cotton comfort clothing both do special PJ's where hands are away (for those scratching times) and other products that are useful.

Sorry for such a long post! Hope things go okay for you.

Thank you very much @Monstermoomin x we've actually just switched from diprobase to hydromol since his flare yesterday as we had it in as a 'back up plan' and his skin is looking better already touch wood x

Just chased his urgent dermatology referral and the urgent waiting list is 42 weeks 😭😱

My little one was horrendous in her first year and a half.. now at 2 and a half you can hardly tell she has it!

We had to put her in this pair of tight hospital prescribed pyjamas for two weeks with a moisturiser which seems to have helped. And I just didn't put anything in the bath at all really.

Hope this helps 💐

Where are you based? I know for here we are at a 34-42 week wait but that's for non urgent, I'd check with either the GP or dermatology department they definitely sent it as an urgent referral and see if they can do a supporting letter to get it pushed up the list a bit.

What treatment has your GP suggested or prescribed other than the emollients?

I totally totally understand. Firstly, having a derm will help loads. You will get into a routine. You will find something that works. But it will take time and it will always be up and down.

Try to get a referral for allergy testing. My DD's egg and dairy allergies were partly responsible for her skin.

She's now 5 and still has flares but it's all much easier to manage. She's so much better than she was.

Try to remove yourself from the mid set or trying to "fix" their skin. You can't do that. You can only work with what you have.

Try different creams and treatments but don't believe in some magic non pharmaceutical cure. If your baby has bad eczema then it's not going to disappear with child's farm or whatever

I needed counselling to help put the anxiety and OCD the caused me into perspective. Please do get the support you need too.

FYI both my children have multiple seveee allergies and carry epi pens but I still think the eczema is the hardest and worst thing we've dealt (deal) with.

Sorry just seen you are getting allergy testing - that's good news.
Some caution though: sometimes the tests arent accurate under 1. We came up positive for egg but negative for milk at 9 months but actually she had both. It was pretty obviously as she has a massive reaction when we tried to reintroduce milk. Came up positive on the test at 14 months

Thank you everyone. It's especially nice to hear about children where it's totally cleared up but yes I think acceptance is key here, especially acceptance that it will fluctuate and I won't always be able to understand why. That's partly what I'm struggling with-I like to understand things and this I just can't!

I checked with the dermatology reception that it was down as urgent and it was marked as an urgent referral and on the urgent list. I asked them to repeat 42 weeks about five times because I couldn't believe what I was hearing! Maybe I'll call again tomo just incase! I'll mention it to the GP though when we see them next and see if they can do anything. They just said they have a huge covid back log!

Interesting about the allergy testing not being totally reliable under one year. Will mention to the consultant and maybe arrange to have it re-done in six months! We're going on Friday so will update!

His current treatment regime is eumovate (which we're weaning him off) and hydromol x

Sorry I've not been able to tag everyone individually xxx

Hello. We were where you are now with your little one's ecezma. To try and give a picture, our son was hospitalised due to his ecezma and his skin looked burnt and raw when he was suffering.
However, it does get better. I found what got it under control was moisturising, moisturising and more moisturising. When he was in hospital the consultants said an ecezma baby can never be too moisturised but it really is trial and error before you find one that works for you. For us it's aproderm ointment and even when the skin looks all clear I don't stop with the moisturising.
Also bathing him in emulsifying ointment works well. I only shampoo his hair every 6 weeks or so with Aveeno baby dailycare for hair and bodywash. At other times when he has a bath I just rinse his hair with water.
Also nail trimmers are great for making sure the nails are short and he can't scratch as well as scratch sleeves for those really itchy days and nights.
It is trial and error till you find things that work for you but it does slowly get better but in the midst of a flare up it can be so hard and all consuming.

Thank you @Sunny1234567 and I'm so glad you're little boy is better. Can I ask what we're the circumstances behind him being hospitalised? Was it infected etc or was it a case of needing intense treatment?

We saw the allergy doctor today and he thinks there's a good chance he has a cows milk intolerance/non ige mediated allergy so we're trying prescription milk for six weeks to see if that helps! X

My first born has it extremely severely. Infected for months on end skin falling off most of his body. He is now 9 and just has the odd flare up. He does have asthma and food allergies.
Here is what I have learnt along the way.
I have cut and paste this from advice I gave someone else ages ago.

First of all don’t be scared of steroids especially something as mild as hydrocortisone. I was too conservative with mine at first and he got into such a mess in the early days. Infected and ongoing eczema is way worse for the skin long term than even quite prolonged use of steroids. I use dactacort hydrocortisone plus an antifungal treatment combined. This is good for the face as it tends to be wet eczema with all the druelling. I always use all steroids in ointment form ( if they come in it) rather than cream as they penetrate better. All good dermatologists will tell you this but GPs don’t seem to have got the message so you need to ask for it. Strong steroids like elocon can nip a bad flare up in the bud quickly - our derm called it and elocon weeekender.

I moisturise with creams and ointments. Creams are more convenient and less messy. Ointments are better but a bit messy and you need to use a spoon so you don’t contaminate the tub with your fingers. I like cetraban cream and epaderm or hydramol ointment. But there are loads and it isn’t a big deal which you use. When younger I moisturised at least twice a day. Even when no eczema.

For washing I use dermol 500 as a soap substitute. And dermol 600 in the bath. This was prescribed by a dermatologist. It is different to oilatum and all the other ones as it is also antimocrobial. Eczema gets bad when the bacteria on the skin gets out of hand. Dermol 600 makes such a massive difference. When we run out his skin immediately gets worse. Unfortunately it has been lumped in with oilatum etc and it’s really difficult to get prescribed now. I now order online at about £12 a bottle. I use for all my kids for their baths who have minimal eczema.

For the scratching I can’t recommend scratch sleeves enough. You can get on amazon. They have a silk mitt which is softer on the skin.

I wash with fairy non bio, put it on an extra rinse and don’t use any kind of fabric conditioner.

Drop your thermostat down a degree and don’t wrap her up too much at night. Eczema babies get hot. Put in natural fibres like cotton (at least the layer that touches the skin).

There are a lot of people that will suggest cutting out major food groups. I would say avoid at all cost unless they have instant allergic reaction. Mine had allergies, think projectile vomiting 5 min after eating, hives, swelling. Fair enough but food intolerance is less likely in correlation with eczema. Consult an allergist before messing about with their food. Also avoid all that natural mumbo jumbo nonsense on the web. Wean any kids down the line at 4 months. I can’t stress this enough. I firmly believe my son had food allergies because he was weaned after 6 months. One of the reasons eczema kids get allergies is they pick up allergens through their skin before they experience through their gut.

Just seen your post regards an allergist so ignore my last bit.

Just seen your message about a 42 week wait. Even pre Covid it was about six months in the NHS.
I would recommend a private consultation if you can afford it. We did this to get into the derm as she was so miserable and wasn't sleeping at all and therefore neither were we. The consultant then slipped us onto her nhs list after that, and she wrote the referral for nhs skin prick testing. It was the best £180 I've ever spent

@olivehater

That's all such good advice, especially the point about not being scared of steroids. That's exactly what the dermatologist we saw told me. I had been using it (steroid ointment) so sparingly on DS as I was fearful but he explained that it's better to use it properly and get on top of a flare completely, and then tail off gradually and work down in steroid strength once the flare is fully under control. And another vote for Dermol as a soap substitute; it's excellent.