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

The GP did also put my son on prescription milk (pepti) but since weaning him they aren't any signs he has a milk allergy.
We were in a very bad place with his skin when he was hospitalised, it was infected and I didn't feel the GP was giving us an effective treatment plan. So we took him to A&E one Saturday morning when it couldn't have waited to see a GP on Monday morning. His skin was weeping, sore, he wasn't sleeping, in continual distress. Luckily for us we were seen by a brilliant nurse initially and then a Consultant. From there things started to improve.
Things will slowly improve for you as well. I remember during the bad days I couldn't take him out because he was continually scratching and I just had to hold his hands. Out and about I also never saw another child with the same skin condition and really felt like we were the only ones.
My husband is a life long ecezma sufferer so it is partly inherited.
My son spent the majority of his first year in scratch mitts and at the start of this year I was finally able to free his hands because his scratching was more under control. Things will get better. X

@olivehater thank you so much for all that-I saw a GP with a special interest in dermatology and she said the same about not being scared of steroids! She said GPs need better training as they scare the life out of people when it comes to steroid use! In hindsight I think when he was on hydrocortisone I didn't use enough and I'm wondering if he was put on eumovate too quickly! Will try the dermol 600 if changing to oilatum doesn't help. The allergy doctor was great and set us on a mission to get every allergen in him in the next month to protect him from developing allergies (he tested negative yesterday for all the main ones). He said if we didn't do that and we went back in four months he would most likely test positive for all of them, so I'm glad we have been lucky enough to be able to do private to find that out asap! Heading to asda later to buy every allergen I can find!

@YukoandHiro we've just booked in to see a private dermatologist for six weeks time incase the milk doesn't help! I'm praying it makes at least some difference though. My mums instinct is that it will although maybe it's wishful thinking.

@Sunny1234567 I'm so sorry you had to go through all that and I can relate to so much of it: I honestly feel that I'm at risk of doing nothing but staying at home creaming all day as it's so hard to do it when out!!! We've just bought some hydromol in a tube to make it abit easier! It feels less stressful on the days when I'm home all day as I have plenty of time to get all the cream sessions in but if we have plans it feels much harder! Especially when he's on steroid cream too and factoring that in!

Thank you all so much again and I will update everyone once he's been on the prescription milk afew weeks ❤️

Is the prescription milk hydrolysed or dairy free? If the former then it could well still cause problems do if you don't see much change then request a dairy free formula before assuming it's not a non-ige allergy.

@Beanbagtrap it's dairy free x pick it up on Monday hopefully! X

My now 7 month old is IGE too milk confirmed via skin prick test a few weeks back . Hes been on a Neocate since around 6 weeks old . We also got told to introduce all the main allergens when weaning . So far we have been ok no other reactions. .

I also agree with the Dermol 500 and Hydromol was amazing for my DD1s skin . She’s my only one who suffers with eczema but yet has no allergies ..

Good luck on the new milk I hope you both see an improvement in symptoms quickly !

My brother had severe eczema as a child, and my mum recommended Fuller’s Earth Cream. We didn’t have great results with it for my daughter, but we use Itchy Baby Co products, which have been great. Her eczema isn’t severe but wanted to recommend in case it helps. Best of luck.

Eucerin

Any tips for little ones who do not want to put cream on? DD (6) hates putting it on.

Mack the pony I would be religious with bathing in Dermol 600. Try a lotion maybe, it’s lighter than a cream and better than nothing ( a lot of the brands will do a lotion version too I think).

Hi @eczemamummy I'm so sorry that your little one is struggling with his eczema. I can see you have had lots of advice already, but just wanted to pop in and share the link to our article on the best cream for baby eczema. Many of the products were recommended by other Mumsnet users, so hopefully you will find it useful.

@LouiseGMumsnet thank you 😊

First full day of SMA Alfamino and crossing everything for the next few weeks x

Thanks olive 😊

Think it's very questionable ethically to post this commercial content on a thread where a desperate mum is trying to get advice on a medical condition. I know all the products are reviewed by real users but it's still commercial content and those are commercial products. Baby eczema is a medical condition which should be treated by creams prescribed by a doctor, whose efficacy are proven. You should direct users to the NHS, not commercial content.

mswales well said. The amount of money I wanted on expensive creams in the early days was ridiculous. It is a medical condition, it should be treated as such and the more we facilitate it the more the NHS can get away with leaving parents to foot the bill.

Hi @eczemamummy i haven’t read all the replies so might be repeating, but I have been there. It’s awful. You see other babies and just wish yours could have skin like theirs. What are you doing wrong etc.

im sure you know this, but here is what I made sure:

bath once a week, unless he does a massive poo which now he’s 6 months probably won’t go everywhere.. or unless he covers himself in mud. When you do bath him, make sure the water isn’t too warm. Water, especially hot water dries their skin so so badly.

use an emollient and least twice a day. Use it all over like a moisturiser. We have diprobase and use it constantly. You can get it on prescription, if not over the counter. High street brands are not good enough.

get a steroid cream for the angry bits of eczema. You might want a conversation with a GP about this first.

have you ruled out a dairy allergy? My son had one it turns out and I felt so stupid for not cutting it out sooner. If breast feeding cut all dairy out of your diet. Even milk powders. If formula, this is harder as non-dairy formula is disgusting and you will need a prescription. Due to covid backlogs I couldn’t see a peadieteician til 11 months by which point they told me to put him into oat milk. I’m not joking. How skin cleared up after 48 hours.

if a dairy allergy, he will grow out of it. My boy is now 2 and still has non dairy milk but he can have treats, cooked cheese, some yoghurt. Catering for a dairy allergy is easier than you think

all I’ll say is I’ve been you: it’s horrible, it’s heartbreaking, but your baby will get better x

@Mammamia23 thank you and you're exactly right about other baby skin envy!!!

We started on a prescription milk on Monday so crossing fingers that helps/makes a difference! I can't believe you saw a difference in two days!!! Did it go completely!? X

Thank you @mswales. I wish it was as easy as just using one of those creams! 😭

Sorry, do you work for Mumsnet? Seems like you do, and this post is completely inappropriate - If your post was reviewed by pharmacists or paediatricians they would have advised you to take it down immediately and not advertise any of this. The items you’re advertising should not be recommended to people whose children have eczema. You have been paid to advertise these, and some users just so happen to rate them. (This is an anonymous forum so we can probably agree to take with a pinch of salt). Essentially, any cream which is not endorsed by the nhs are one and the same. They might help dry skin, just like Nivea but no no no they are not “the best”

please considering removing your post - if your child has eczema, an emoillionet such as Diprobase plus steroid cream is all they need. Not this Moogoo overpriced bollocks. The person who wrote this article clearly does not have a child with eczema nor did they consult with parents of children with eczema nor did they consult with healthcare professionals - if they did they would use completely different language or probably not have written the article at all. You do not ever ever ever say things like “best on market” “will clear your child’s skin” when talking about a product which is trying to remedy a heartbreaking condition

Hi @eczemamummy yes we started on the Friday when he was 100% bad and by the Monday he was around 10%. He is quite open to dry skin though - we had builders in for a day and his eczema flared up badly, and cold weather is bad on his face but it’s definitely dairy and like I say he’s building up a tolerance to it now I was so emotional and felt so stupid for not realising sooner. Take note about the bath though and only use moisturiser recommended by a pharmacist. Please don’t look at stupid overpriced creams advertised on Instagram and please avoid the creams that Mumsnet are advertising

Well said. I’m furious. How dare @LouiseGMumsnet recommend items and then pretend that real people recommend them. I doubt Mumsnet did any research on these products and certainly wouldn’t have asked mothers to tested on their children. What mother would do that.

they need to find other ways to make money

I will give you another light-at-the-end-of-the-tunnel tale: my DS had terrible eczema flares as a baby and by his first birthday, everything except his face was affected. It took that long for us to get a referral, so I am very glad your doctor took you seriously early on.

Mine has CMPA and he is now 8 and the allergy is still there. But as long as he does not have dairy, he has absolutely no eczema. He also has no scarring from the worst stages and I am relieved about that. (We used bio oil once the skin was getting healthier again - no idea if it helped but it didn’t hurt.)

One thing he has that might be helpful to keep in mind: if DS has no dairy, he is fine with all other foods. If he somehow does have dairy, he will react to many other foods including wheat, strawberries, and tomatoes. This took a fair bit of trial and error to discover because it doesn’t really come up on a test, but with time and lots of food diaries, it all made a pattern. So in the rare instances when he is exposed, we now go back to a really restrictive diet for a few weeks to allow for healing. Otherwise the symptoms go on for ages for him. I don’t know how common that is, as the allergist he sees only had a few patients with similar issues, but she also said it’s just hard to track so it might be there for more kids without anyone realising. Fwiw, at any rate!

But my 8yo is very happy and healthy and quite the advocate for himself and other kids who suffer with similar issues, so think positively and stay proactive. With some luck you will end up with the flares being a distant memory!

My dd2 who is now 14 with beautiful skin had the worst excema ever. People used to gasp in horror looking into her pram it was heartbreaking.
my gp wasn’t very good we had to keep going back but eventually turned out it was allergies to cows milk protein amongst others.
things I would recommend - push and push for comprehensive allergy testing, our local hospital couldn’t cope with the severity so we now go to the Evelina in London.

Wet wrapping - enormous slippery faff but she actually slept once they were on.

Snugglepaws excema clothing range - or long socks on hands to stop scratching

Have a stock phrase for anyone in the street who absolutely knows what to do to make things better as if you haven’t tried stuff…

She grew out of the cmpi protein allergy aged almost 4, eggs fairly recently.

It really was a horrible time for us all I really feel for you.
I truly never thought she’d look the way she does now

DS2 got horrendous discoid eczema out of nowhere when he was a few months old. We ended up going private and the only thing that kept it at bay was elocon (I have eczema myself so I know all about steroids) so was reluctant to use it TOO regularly. He was on formula at the time but everyone ruled out allergies.

At a year old we switched his formula to cows milk, his eczema disappeared. Eczema is usually a symptom so there's almost certainly something causing it. I've had eczema all my life and still don't know what causes flare ups but central heating definitely exacerbates it. The truth is, it's unlikely to be this bad forever but there doesn't help you both with your suffering in the meantime. I'm sorry you're going through this but please know that it won't be this bad forever.

Thank you again so much for these most recent posts. I'm feeling extremely hopeful that the new milk will at least help some what, and just trying to focus on weaning on the allergens to give him the best protection for the future, as well as keeping a food/skin diary (without trying to get too obsessed!)

I can't believe people would look in the pram and gasp, that must have felt absolutely awful 😭 x

I also love the suggestion of thinking of a stock phrase to say to people when they suggest everything we've already tried!!!! Will get my thinking cap on to try and think of something not too rude but still that sends a very clear message 😂 xx

DD now 19 was very poorly as a baby. Breast fed to 7 months then looked like she was bleeding. Allergic to soya, eggs, cows milk and some nuts. This went on to 7.
We bought gloved pj's and she had a milk formula that smelt like gravy, disgusting but it worked.
Today she can't eat eggs whole but in a cake etc, can drink cows milk in small quantity but has developed an allergy to some nuts. She eats porridge and that helps too. Watch the friends giving yogurt, it use to 'burn' our dds face. She also has asthma.
We used fairy non bio and other than her arms she has clear, beautiful skin.
Our son had no allergies but has developed a milk allergy at 23. Both can't be too hot and need 100% cotton bedding.
She uses E45 now. Simple shower gel, Tropics Tamaru balm on bad flairs and scars. Rarely steroids. None are suitable for babies. Good luck.