To be worrying so much about DD's eczema and going to nursery soon

[GalaxyGirl24]

So, my DD is due to start nursery when she turns 1 soon, and I am really anxious and upset at the prospect of her going to nursery with her skin reacting as it does currently,

She had moderate to severe eczema on her neck, behind knees, feet and arms. We have prescription emollients and a soap substitute. I also buy other types of creams to try find that perfect one (if it exists), scratchsleeves pjs, happyskin pjs, mitts, long socks, etc.

If left to her own devices or if hot/angry she will scratch uncontrollably and very slyly until she bleeds and is literally raw. She has diagnosed food allergies that impact her skin also.

My AIBU is am I worrying unduly - will the nursery be able to manage her needs? I know I need to speak to them still but just any advice from those who've had similar situations with their children so I can go armed with info, as I know some nurseries can be funny re special creams, keeping children away from certain activities. I am just so so worried and I find myself working up into a panic about her poor skin.

Thank you all, I will mention recommendations of immunology department involvement.

Please try and avoid creams the doctors give you. They have so much crap in them including paraffin, that its likely making your child's skin worse.
Try and go for natural products.
Moogoo is absolutely amazing. I've lived with eczema all my life, from severe to mild. Now my child has it but I used moogoo products, shampoo, body wash and cream and it just disappears. Like magic. Its not cheap but you can't put a price on a child's skin.

Please don't worry about nursery. They'll give you a medical form to fill out. You can tell them all they need to know. Nurseries are good at applying creams regularly.

This is used as a daily cream.

[quote GalaxyGirl24]@girlsyearapart Thank you very much ! We do actually have epaderm ointment so I could try wet wrapping as soon as I can find the wraps or get them prescribed.

@Wolfiefan Completely agree that steroids can be useful but they are also really damaging long term. We have been advised by our GP to use them extremely sparklingly and for a maximum of 4/5 days due to my DDs young age. Of course I want her skin to be better, and I will use them when it's at its worst for a short burst but I'm thinking long term for her as well and I'd hate for her to suffer with the issues I've had in terms of discolouration/scarring/thinning considering her skin type seems to be very similar to mine. I'd much rather find a natural or less chemical laden alternative and sometimes these threads can throw out a real gem from experienced people. Her regime is very tightly managed but unfortunately it takes just a few seconds without her mitts (bath time, meal time for example) for her to get to an area of skin and cause real damage.

@unvillage Thank you do much for the reassurance and advice - the point about the notes near sinks etc is really useful as I'll keep an eye out for that and make the suggestion if they don't already do that! [/quote]
Hi,

You need a referral to Derm or a paediatric eczema nursing team.

The advice your GP has given you about steroids is completely wrong. You will keep getting flare ups without topical steroids for a decent length of time - it doesnt completely clear so it continues to re surface.

Finding one emollient is also key, changing too many ie finding the perfect one is too much for her little skin!

Our nursery are wonderful at following a regime for skin

Do you use a derma 500 cream as soap and hand cleanser for baby? NO soap or alco gel at all. Do you use Surecare washing powder?

We are going through the same and sadly the GPs are not usually super knowledgable about treatment. You need specialist advice

@GalaxyGirl24 GPs are often very wary of steroids. Push for a referral to paediatric allergy. My sons eczema cleared in days once full allergy testing led us to a revised diet. It was completely transformational. Also, I was told by the consultant there that steroids are bad for skin long term, but eczema is worse. So no need to refrain on that account. If you are just using hydrocortisone it won’t do enough. Hospital strength steroids are another league.

Galaxy, have you considered starting a detailed food diary .. a lot of non IgE (non 'testable') food allergies cause eczema. I managed to get my son to a point where even the doctors said he didn't look like an allergy child (perfect skin except for the eczema behind his ears)... but it did take a lot of trial and error to find all the foods that caused skin reactions

Mom to a 12 year old who's had severe eczema and food allergies since 6 weeks old. I remember her starting nursery and didn't think they'd truly understand the severity of my daughters eczema and how quickly she could get at her skin and literally rip at it. She was bandaged (comfi fit bandages) and had to be watched all the time. Creams applying through the day. And to be honest there were a few blips but they soon got it. She also wasn't seen by a dermatologist at this point but our gp did refer her to our children's community nurses who came round to show me how to wet wrap, apply zinc bandages etc. They were great and also came into nursery to give advice. Might be worth asking your gp if that's an option for you.

Immunology was our biggest breakthrough. Lots of skin prick tests and then eliminated certain food (soya in her case) and her eczema became more controlled.

She still has terrible eczema and she decided that she's now wanted to try an immune suppressant so she's started methotrexate. 12 weeks in now and she finally for the first time in her whole life can sleep at night and doesn't look like she's burnt.

Hope it all works out for you x

Completely agree with those saying you need to stop worrying about the steroid cream, the risk of infected skin and the impact on her life. Also anti histamines are no good if used on crisis days, they are better being used over time. Honestly you need to demand a referral it's a real bug bear of mine that doctors leave small children suffering.

My DD had terrible eczema from a few months old and my main piece of advise is to get a referral to a dermatologist as soon as possible. GPS, however well intentioned, do not tend to have up to date advice.

We used steroids A LOT on DD and her skin now is fabulous (she's 13) - no thinning at all. We did wet wrapping when she was little and special pjs from Eczema Clothing for years, which had built in mitts and salopettes (sp?) so she couldn't scratch at night.

The dermatologist we had was amazing. DD ended up on immunosuppressants in the end at about 4 and it was amazing the difference it made. She still gets the odd flare up but has never come close to being as bad as it was when she was little.

Does anyone have any advice re weaning a child with eczema - mainly in regard to the fact that we baby led wean now and she needs hands free for that but then can get frustrated and scratch. Obviously we hold her hands when this starts but she can do damage in the few seconds it takes us to put down whatever we're holding at the table and grab her! @Wolfiefan you mentioned that you thought my regime needed tweaking - have you ever encountered this and have you any advice? We've tried mittens during meals but it really impedes her eating and sensory enjoyment so had to scrap it.

Thanks for all of your replies everyone, reassuring to know how many have used steroids in childhood without the same side effects I suffered as a childhood steroid user.

@bookish83 Yes we have non alc/SLS soaps for hand washing etc. I've never used detergent soaps for clothes washing due to my own eczema. We use soap nuts or just hot water cycle with regular washing machine cleans/detox to make sure there's no mould build up.

@ILoveYouILoveYouIDo Thanks for the recommendation of moogoo. It would be nice to have an emollient cream that doesn't have a ton of awful chemicals in.

@Solasum We are already open to the paediatric allergy team. She's had bloods, and 3 sets of skin prick tests, we are just awaiting the full results but have found out a couple of her worst allergies.

@seanceinterrupted I kept a food diary as soon as she started weaning so there are a few ones that I know flare her up, for example banana, that they said they couldn't test for. Completely agree that there are things that can trigger eczema highly individual to one person, for example with me it's too much wheat and sugar and I have horrific flare ups and itching.

@blissfulllife thank you for the advice and I really hope your DD is able to get her eczema under control with her new course of immunosuppressants. I know it can be all consuming and it's such a painful battle.

@Ducksurprise we've started her antihistamines again today, hoping it helps prevent her mad itching episodes which are definitely linked to her mood/anger as well. @mrsfeatherbottom thanks for the advice we will be looking to get advice on wet wrapping and already have so many eczema clothing sets. Really hoping to get hers under control but it escalates to the levels I had throughout childhood.

Re weaning - if you look online you should find allergen food groups ie certain foods which will probably all trigger allergies if one does. They are not always as straightforward as you’d expect

Thank you @girlsyearapart

A few things that haven't already been said:

• Steroid creams are good. Don't fear them. If her eczema is uncontrolled to the point where she is scratching all her skin off, why do you think steroids are going to do more damage than pulling all of the skin off? Sometimes you get to the point where nothing will do other than a short course of steroid cream/ointment.

• It's not your fault and she isn't living the same experience as you. Plus, she won't remember any of this. You don't say at what age you developed yours, but I've had mine all my life long, and honestly, a lot of it I don't recall. My DM remembers the painful details (and tortures herself with them), but I mostly remember the times when my eczema was under control. Don't let the mum guilt get you (I can sense a distinct undercurrent of it in all your posts.)

• Watch out for infection. If she's scratching all of her skin off, the odds of infection creeping in are good. If she has the type of eczema where she develops blisters, watch out for colour change. If the skin gets infected, not only will she need a steroid, she'll need one with an antibiotic element to it.

• As messy as they are, wet wraps provide comfort, so if she's been in pain from the dry/broken skin, these will feel really good. Something worth knowing when you're in the middle of a lot of mess. They can be worth it all.

• Ignore any advice to ditch the doctors and use miracle products. There are none. They're all snake oil. Controlling eczema - like you already know - is mostly about identifying the triggers. Most people who have found some kind of magic product have also just started avoiding/grown out of their triggers.

• The only non-prescription drugs worth anything are vaseline and sudocrem. They are not miracle cures, but can work well as part of a wider treatment plan that does include prescription drugs.

I'm an ex nursery nurse. As PP said, they should be very hot on this - her creams and allergies. I would contact them ASAP and explain DD has some medical needs. They should go through and record everything on forms for their info and we would have made posters with her photo and medical/allergy info on for around the room and kitchen/by sinks. Be as detailed as possible with instructions for creams/meds. Ensure everything is clearly labelled with her name on the pharmacy stickers as many nurseries will only give prescribed meds (which this obviously is!)

Make sure you know how they communicate stuff with you in the first few days. Be honest with the staff in the room and say you're a bit nervous about it all. I once had a mum cry on me at her baby's first visit because she was anxious about leaving her.

Both my kids have eczema, although not as severe sounding as your DD.

Nursery have been great. I sent in their cream and special soap stuff and they use that every time they wash their hands. They have also been very on top of my DS food allergies

Good luck!!

My dd was like this. Everyone is different but I thought it might be worth mentioning the a vitamin D3 supplement can help (there is some research on it, though not a lot) - my daughters eczema noticeably improved after a couple of weeks of supplements. I used Wellbaby liquid, which has D3 in it. Also probiotics can help, Optibac do a power for babies which you can add to food like yogurt. I understand your reluctance over steroids however if she’s that itchy then doing one week of hydrocortisone twice a day will really settle it down. I always ask for hydrocortisone ointment rather than cream, it’s greasier and I find the cream a bit useless but the ointment seems to work much better. Sometimes it’s just a case of getting on top of it with hydrocortisone for a week then it can be managed with just emollient for a while.

Also I’m sure you’ve already thought about this but have you tried changing washing powder, cutting out fabric softener (if you use it) etc? It was trial and error for my dd with which washing powder her skin tolerated. It can make quite a difference though in itchiness. Also as a PP said try use the antihistamine regularly for a while, rather than ad hoc. I totally get wanting the find the underlying cause but these things may just get the current situation under control and stop the torture for you both! (It really is torture, I used to cry over my dd’s eczema all the time! Fwiw she’s 6 now and it’s MUCH better, not gone completely but just small patches now and very under control)

OP just a word in support to say that you may be absolutely right to avoid steroids if possible. Look up the movement trying to create awareness of steroid withdrawal for eczema (if you are not already aware). It's a horrible condition, is have no advice I'm afraid but great sympathy as a fellow sufferer.

@FrancesFlute

I'm an ex nursery nurse. As PP said, they should be very hot on this - her creams and allergies. I would contact them ASAP and explain DD has some medical needs. They should go through and record everything on forms for their info and we would have made posters with her photo and medical/allergy info on for around the room and kitchen/by sinks. Be as detailed as possible with instructions for creams/meds. Ensure everything is clearly labelled with her name on the pharmacy stickers as many nurseries will only give prescribed meds (which this obviously is!)

Make sure you know how they communicate stuff with you in the first few days. Be honest with the staff in the room and say you're a bit nervous about it all. I once had a mum cry on me at her baby's first visit because she was anxious about leaving her.

This. The staff at ours are amazing and so thorough. They are also great working round food allergies

@GalaxyGirl24

Re weaning, can you use a barrier emollient on her hands to eat? Then derma 500 wash straight after then emollient cream

DD had it really bad on the back of her knees at that age, thankfully it's improved with age. We found she would scratch and scratch overnight so we would wake up to red raw bleeding legs and bed sheets that looked like there had been a massacre.

Best thing we found was to use the smallest size tubigrips like you would use for a sprained wrist or ankle.

We would wash her legs with Luke warm water, gently pat dry then slather on a thick emollient cream and cover with a length of the tubigrip puller up so it covered mid calf to mid thigh. That way she couldn't scratch it and it didn't dry out and get as itchy.

In the morning like warm water again to wash it and then we would moisturise again with just a little cream and leave it to air dry. We found if she got too sweaty or too dry it would flare up so it was a delicate balance during the day and a matter of watching and jumping in quickly if she started to scratch then rinsing it off and moisturising.

Nursery were really good about it but we did have to work with them to build out a routine of how frequently they should re-moisturise. We figured out if they put a bit on every 2-3 hours that was good enough to maintain the improvement then we could do all the washing and wrapping when she was home.

Would a childminder be a better option for your dd?

Another thing we found which has been brilliant to stop the scratching is Duo Derm - it's like a second skin that you put in over the top of the cream.

The dermatologist will have loads of things to try that the GP would never suggest, like Milton baths to prevent infections.

Someone else mentioned MooGoo - we found their shampoo very good - all other ones for a while irritated her scalp.

We use Epaderm as a daily emollient. It'll be trial and error to find the one that works for you. When we first attended the dermatology clinic, they had sample sizes of loads of different creams and ointments to try.

HTH

Both my daughters suffered really badly with eczema as toddlers, particularly on the back of their knees. My husband has suffered terribly with eczema throughout his life & particularly at times of stress. We were prescribed steroid creams & also tried various other emollients etc. The one thing that worked for us (as in pretty much cleared it up overnight) was Dream Cream from Lush. It was absolutely incredible. I still keep some in for if they have a flare-up which now is thankfully rare.

I’ve since recommended it to another mum in my elder daughter’s class at school who reported the same amazing results. However, as a word of caution, it did nothing for my husband’s eczema so I’m not saying it’ll work for everyone, but worth a try? I remember the agony at watching my children suffering with open sores all too well - it’s heartbreaking.

As a secondary point about Nursery - most staff are fantastic, but be cautious of mud kitchens. Whilst great for creativity, we found it caused huge problems with our daughters’ skin as they were getting wet & then not drying their hands properly.

I really hope you find something which works for your child & my very best wishes.

Hi all,

Thank you all so much for your advice. To clarify, we do use steroids but try to not use these all of the time as I am aware of side effects
@Whybirdwhy Me too, and I'm aware of the group of people who are trying to raise awareness of steroid damage. I follow the Facebook group TSW Warriors (Topical Steroid Withdrawal) - some of the stories are truly awful

Posters, please don't get the impression that I'm sat on my hands letting DD suffer in pain. I use steroids to fight her flares and try to manage it at all other times by keeping her hands covered with silk scratch mitts day time (as much as possible bar meal times) and all night. If when she goes to nursery she needs steroids everyday so be it. I truly truly believe that if I can find the individual triggers for her and manage them as best I can we can get to a point where she can be eczema free - will push for dermatology appt and awaiting our ongoing allergy test results.

I may be in panic mode as I'm acutely aware of the damage eczema can cause, so maybe to others they would look at my DD and say she's not that bad but to me I'm hyper aware of it. She can heal very fast but can also scratch in seconds and then the few seconds over the course of a day can add up to red rashiness. She by no means has open wounds or sores!!!

Also, my original post probably seemed very high panic. I meant that she can make herself bleed if left to her own devices, this only happens during 'blips' where say she has managed to work her scratch sleeves off and has quietly been scratching, or say during meal times when I've literally had my hands full not been able to drop stuff and she's done some damage in a few seconds.

A lot of you have reassured me re nursery, so thank you!

My plan is as follows:

Medical led:

• Await allergy test results and adjust diet accordingly
• seek dermatology appt
• use antihistamine daily
• use steroids when necessary

Holistic led:

• use Vit D3
• continue to manage diet with v little non natural sugar
• Scratch sleeves and mitts whenever possible day/night
• try keep her cool as she seems to suffer in heat