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.

If the eczema is that bad haven’t you been given steroids? Have you seen a dermatologist?

My dd2 also had dreadful excema and when her food allergies were truly identified it really cleared up.
I had to push for a referral to a specialist for her though.
The only thing that worked when she was around the same age as your dd was wet wrapping her which was horrible to get done but meant she slept ( and so did we..)
She didn’t go to nursery till she was 3 but they were great with her creams epipen etc.
Ask to have a meeting
Good luck - dd is almost 13 now and has beautiful skin 😊

The setting will be used to dealing with dietary requirements and can also apply creams etc if needed- this can be arranged and normally a form of some kind is needed.

@Wolfiefan We've been to the doctors (never been seen by them though due to covid, they've seen pics) and prescribed creams. We have steroid creams that I use when her skin is absolutely awful but as a lifelong eczema sufferer myself steroids are a slippery slope and they thin the skin significantly and cause lasting damage even when used 'correctly'.

@girlsyearapart I have heard of wet wrapping and I wanted to give it a go but apparently you have to be shown how to do it properly? I can't seem to find any really good videos about if for babies. I'm waiting to hear back about the full extent of her allergies.
Glad to hear your DD has her skin under control, it must be such a relief for you both as it's truly an awful thing to deal with!

@supernooodle Yeah, I'm going to email them to look at when they were planning her settling in days which should really be soon. I know they will do their best, it's a good nursery, but (and not to sound ungrateful or belittling of them) I'm really worried that their best won't be good enough - because it sometimes isn't when it's just me and her 1:1 or even sometimes me and her Dad 2:1 is what it takes to stop her ripping herself to shreds 😞

Yes we were shown how to do it and prescribed the wet wrapping stuff. Push for it it really really helped

@girlsyearapart Who showed you how to do it so I know who to push for a referral to (if you can remember), I'm not sure if it's meant to be GP/Dermatologist etc

It was all a long time ago now but I think it was at the hospital and we picked the wet wraps up from the chemist
A gp probably can prescribe though.
It’s not as hard as it sounds the wraps are actually sort of tights and a top with hands and feet covered

I think it was epaderm the cream we used then you do the wet layer then a dry layer.
Took a bit of practice at first but you get used to it

Hi! I work in a preschool and have a lot of experience with allergies and eczema needs. You need to make sure that every part of your daughter's needs is noted down. If the nursery is like my workplace, they will have a folder with every child's specific needs, all staff will be trained, medicine (including creams) will be signed in and out and a form will be filled out when they're used, and reminders may be posted at sinks - "XX - no soap, cream in X location" so that all staff, even temp or new staff are always aware. They will be particularly hot on the food allergies and that information will be posted wherever food is served so that there can be no mistakes made.

Certainly her clothing needs will be adhered to and they will be able to use her cream as often as you require, just make sure you're very specific when you meet with the manager.

Nurseries take things like this very seriously and will do their absolute best to keep her from scratching, but as you acknowledge even you can't be 100% perfect and she will not be the only child there - would a nanny or even a childminder be better suited?

If used correctly steroids are really useful. They shouldn’t be avoided for fear of thinning the skin. If your child is scratching until the skin bleeds then you need a better regime. That may have to include steroids. And try different emollients.

@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!

Has your GP suggested an antihistamine to ease the itch? It works for our DD but I would recommend checking first.

Op if you can I would recommend going privately to a dermatologist. We did this with ds and it was the best money I've ever spent. Nhs referral took a really long time for us pre pandemic and huge gaps between appointments and I expect will be more of a nightmare now. A dermatologist is honestly so much better than a gp and will be able to look at the best combination of treatment for her.
As for steroids- the dermatologist will be able to prescribe them in a way that will not cause long term damage. For example with ds we did 2 weeks steroids every day and then weekends only until no excema could be seen. The 5 day break in between minimises the chance of long term damage and the improvement in ds's skin was amazing.
For ds- using only dermol 500 to wash and then dermol 600 in the bath and a 10 minute bath every day worked really well. But its so individual for everyone .
As for the nursery- yes they should be well used to children with skin conditions and if you discuss with them before hand will be able to follow the regime she is on.

@JohnLapsleyParlabane We have an antihistamine that we use when she's being triggered, or in anticipation of a bad day (heat/grass etc)

Can you push for a referral to the dermatology dept at the hospital? I know you say you want to stick to natural things as much as possible, but it could really help your daughter to be seen by a proper dermatologist. We did this as my sons eczema was bad, not as bad sounding as your daughters though.
We tried all the various emollients and lotions and the steroid from the GP before asking to be referred.

They prescribed a stronger steroid that was to be used for a maximum of 10 days. We stopped it after a week because his skin went great. We've needed to use it a few times since, but only for a few days at a time. We've stopped using the lower strength steroid completely, that used to be every day, as we just don't need it. He still gets the thick vaseline like moisturiser every day to help prevent flare ups.

We had bubble bath for the first time ever last week and DS was overjoyed! He's never had food allergies diagnosed, but I strongly suspect he was sensitive to cows milk protein as he had bad silent reflux and gastric issues early in life. I think he's grown out of it though, so maybe that's why his eczema is starting to get a bit better

Sorry for grammar issues but buttons playing up. Forget wet wipes they are horrible things. you need to ask for visco paste with tubifast bandages. They are cream soaked bandages which you wrap around the skin and then out the dry long bandages over to stop the cream leaking. I was born with horrific eczema and still to this day have bad flare ups and have recently got this again and it’s a life saver. Stops me from clawing st it at night as it’s two layers of bandages to try and get through and you can leave them on all day it really helps to start closing the wounds. So much easier to use than wet wraps and more comfortable for little one. I wouldn’t wish eczema on my worst enemy a lot of people including some doctors don’t understand it either which doesn’t help. Sorry again for my awful typing and hope whatever you decide to go with helps your lo x

I think the steroid info is a bit outdated - we were advised to use them as much as needed (sticking to the correct amount) and that using them for a couple of weeks to get on top of the rash was preferable to every now and then, which doesn't really have any benefit. We had a range from a low dose hydrocortisone to the much stronger Betnovate, plus Fucibet for areas where the skin was broken. Betnovate completely cleared the really angry rashes in a matter of a couple of days.

I think if she's wearing mitts all the time and will scratch to bleeding in only a few seconds of the mitts being off then she must be extremely uncomfortable all the time. Steroids are a really important part of the eczema regime.

I should also say that my child has now largely grown out of the eczema aged 8, and has no discolouration or any damage to his skin.

www.chemist.net/Pharmacy/medicines-children-s-healthcare-children-s-skin-care-eczema-dry-skin-treatment-for-children/molnlycke-health-care/tubifast-vest-various-sizes-pd-17308.html

If she is suffering to such an extent that a few seconds without her mitts on means she’s “causing real damage” then her eczema is not being managed at all. You need to go back to the GP. Get better advice. If they can’t help then you need a dermatologist.

GPs have been told by NHS England that where a patient has a preference for how they're send they should be facilitated in that: so if you pushed really hard you should be able to get an in person appointment for your daughter. Your child shouldn't have to suffer likes this and the health service needs to be pushed to meet her needs and get her eczema properly managed.

I've had infections that have required months of steroid cream to treat and it's not been an issue, though obviously I recognise she's young. I'd also be wondering if given antihistamines help a more regular regime of those might be of benefit, but ultimately the GP should be able to advise.

My dermatologist told me (and I appreciate that it is advice for an adult) that not to keep antihistamine and steroids for bad days but to go in all guns blazing and told me to take a good dose of antihistamine daily, have me oral antibiotics for a week, steroids for 10 days and emollients then Instructed me to use a mix of emollient and steroid daily
Then best creams were dermol 500 for washing, cetraben, elocon then down a step to eumovate then eumovate mixed with cetraben and fucidin

I was also sent to a dietician and allergies identified and cut out a lot of food.

I have to keep on top of the regime but it works. I wonder if you could speak to someone . Also I had samples taken to test for bacteria and fungal infection too just in case

Thanks for all of the advice - I definitely will push for a referral to the dermatologist as they may have new info and advice to support us.

As noted previously, I've suffered from mild to bordering very severe eczema over the course of my life. I've used every cream and steroid going - and if I'm 100% honest the only things that truly helped me were eventually after years of harassing GPS for food allergy tests and avoiding those foods and my other triggers. My DD is open to the allergy clinic and we are awaiting full results in the next few weeks.

I appreciate my daughters skin is a different case to mine and I'd hate her to be suffering so I do just want to reiterate that I am using all of the prescribed stuff with a view to actually addressing the underlying issues. However, I genuinely do believe as an eczema sufferer that the cause is so much more helpful than the cure so I'm constantly on the hunt for ways to combat underlying skin weakness found in eczema sufferers.

Will push for dermatology come Monday. Will resume prescribed Piriton on a twice daily basis from tomorrow and will look into tubifast and wet wrapping. Thanks for the link
@Hankunamatata

I’ve ended up on immunosuppressants as my eczema is so bad. The right creams and protocols are priceless though.

OP iv a different allergic skin condition but take an immnosuppressant and antihistamine daily prescribed by immunology dept. If not under immunology it may be def worth asking for a referral too