horrendous eczema sores on baby

[mamatilly]

7mth baby had flare-up afew months ago, calmed down but left him with patches on his shoulders which now are all across shoulders and are open sores... slowly getting bigger, never healing over, so oozing stuff out at night, it is just awful and i am so worried.

doctors have been so slow to act, meanwhile getting worse but very slowly... using acqeous and a hydrochortisone/antibiotic cream, but both useless.

seeing dermatologist on monday so what should i be asking/hoping for from the meeting? can i realistically expect them to prescribe a strong steroid that will clear up these open wounds, and then look at managing it on a long term basis?

help.... am so worried that he is slowly becoming covered in an open wound...

thanks x

[brimfull]

Hi
My ds had awful eczema at this age as well and I know how worrying it is.
Luckily my HV and GP referred him to the dermatology clinic at the hopsital.We were prescribed a stronger steroid cream and different emolliets which luckily worked quite quickly to heal the open sores.
We were given an open appointment with the hospital dermatology clinic so that anytime I was worried about his skin I could phone up the nurses for advice or go and see them.
What percentage steroid are you using atm.

[chegirl]

Poor baby

It sounds like your baby's eczema is definately infected. He/she may need some oral antibiotics as well as the cream.

First thing is to get them clear before you can try and get the general eczema under some sort of control.

Chances are your LO will grow out of it but dont let the dermatologist fob you off with that old chestnut. 'Growing out' can take years.

If your baby needs a strong steroid the Derm. can prescribe it. IME they will prescribe anything that will work.

There are loads of things to try and it is pretty much trial and error because not everything suits everyone.

I have found icthopaste bandages very good. I had to push to get them because they are seen as a bit old fashioned and messy. I knew they worked because I had used them on my DS1. When I finally got them for DS2 they really helped. You can ask for the community paediatric nurses to teach you to apply them.

Two tips I can give you:

Write a list of questions and concerns to take with you. Its so easy to forget everything once you get in.
Ask for an appointment in a few weeks. They may try and book you in for months in the future. This is useless because eczema can change from week to week. Whilst your LO's skin is so bad you need to have regular checks with an expert (your GP is v.unlikely to be one). We see the dermatolgy nurse who is brilliant and really on the ball. It may be easier to get an appointment with yours if there is one.

Good luck. I really hope you get LO sorted.

[mamatilly]

hey thanks for your replies, i am besides myself with it all (in tears right now) and it just is such a relief to read your words and feel less alone with it all.

thankyou xxx

[brimfull]

aww mamatilly

It is horrendous not being able to help them.I used to have to peel ds' face of the sheets in the morning.I thought it would be a life long thing for him but he is now 6 and only has it behind his knees and arms.
Tbh he improved a lot when he was 2 .

Only one more day and you will get some help-hang in there.

I agree with chegirl-you'll probably be prescribed stronger steroid cream and maybe oral antibiotics.
Are you going with anyone else to support you?

[mamatilly]

no, just me going with him, but thats ok i guess..
yes i have to peel his pajamas off every morning it breaks my heart.. i just feel such a bad parent, that somehow i should have done more sooner, like that. he gives a beautiful smile and i want to lay my life down for him...

[smallchange]

Ds's eczema is fairly mild but I found it useful to read the NICE guidelines to get an idea of what I could/should expect the dr to prescribe.

Here for the full guideline

And here for some aspects of the guidance and other patient info that might be useful.

[Katisha]

DSs are 9 and 7 now and their eczema hardly flares up at all, but when I look back at photos of them as babies/toddlers it's a real shock - awful red, weeping patches.

WIth DS1 we had to pay to get a private dermatology appt when he was a baby as NHS was unable to do anything useful for some reason. We ended up doing the wet wrapping thing where you put the steroids and diprobase on and then bandages. Sorted it out pretty damn quick.

Then for a couple of years we would have to get antibiotics for the eczema every now and then as they would scratch patches to death (behind knees particularly) and it would get infected - again bandaging was the way forward.

And as I say - now they hardly get it at all. Just a bit of dry skin now and then. Actually my eczema is worse than theirs!

[foxinsocks]

ow that does sound sore doesn't it

yes, I agree, they may give you some oral antibs so you get a double whammy and it works quicker

everyone else's advice seems v good - please DO write stuff down. The amount of times I didn't then felt overwhelmed when talking through the problems and left out things I wanted to ask.

Key questions I think are 'if it gets worse, should I call your clinic first' (after whatever treatment they prescribe)

'how quickly do you think we should see an improvement'

'what signs should I be looking for that mean it is getting worse and I need to seek further treatment'

and tell them you feel the doctors were slow to act

[mamatilly]

thanks, will definitely write those questions down and take with me...

i will post an update after monday visit

thanks everyone, off to bed now xxx

[girlsyearapart]

mamatilly please don't feel like you're the only one going through this. I am also frequently in tears over my 9mo old excema.It breaks your heart doesn't it? Hearing 'they will grow out of it' and 'there could be so many worse things they could have' doesn't really help at the time.. At about 5 mo went to dermatologist at hospital- this was after seeing every GP at our surgery. To be honest the derm we saw wasn't all that helpful said 'oh yes my daughter had dry skin too'- my baby had cracked red weeping sores all over her face. People used to recoil in horror looking into pram. Anyway we had antibiotics and the steroid cream which worked for us in the end was called Eumovate others didn't seem to work. Also -eventually- referred to dietician which seems to have worked better than anything else as she took one look at her and said 'classic cows milk protein allergy' now on fairly restricted diet and skin has cleared a lot but still not great and we are going to start wet wrapping next week. You know your baby better than anyone else don't let them intimidate you at the hospital push for referrals and follow up appointments. Good luck xx

[Tam60]

Crickey mamatilly, am also feeling tearful reading this. I have Ds aged 6 and dd aged 4, both had eczema since birth. It sure is hard! Very good advice from chegirl. It does sound like your baby's eczema is infected. Ds had horrible open weeping sores all over body Xmas 2008. Saw various GPs before finally seeing an experienced one who prescribed strong course of oral antibiotics and strong steroid cream. His skin healed up within 5 days. He still has widespread eczema - we use Eumovate (moderately strong steroid) every day - but nothing like as horrid as when his skin was infected.

Other tips which might be helpful:
-ask for an Open Appointment. This means you can go call straight to Dermatologist in Hospital to make another appointment rather than going through your GP again.

-ask if there's a Dematology nurse who can talk you through the practical aspects of managing a child with eczema (good skin care regime, bath time routine, wich emollients to use etc).

Good luck, I really feel for you.

[mamatilly]

just back from the hospital, and finally feel someone has listened to me ...

saw a consultant dermatologist and pediatric consultant who studied baby's skin under a bright light and muttered to each other for a long period of time...

they think that yes definitely excema, which has been under-treated for long time and have prescribed

• Dermal lotion as emollient,
• elidel 1% cream for face
• betnovate c ointment for rest of body

i should expect to see improvement in next few days and must go back in one week to see consultant and nurse to make longer term care plans etc..

phew! any thoughts on these medications?

and - what are your views longer term on dairy-free and wheat-free diets/herbalists/ etc any other remedies so as to avoid these hard-core meds, which i appreciate are needed in the short-term to help poor baby...

thanks
xxx

[brimfull]

good news mamatilly

I bet the 1% steroid cream will make a big difference ,I found the 0.5% pretty ineffectual on ds .

If it's any consolation ds was slathered in 1% cream on his face regularly at that age and his skin is fine now-no detrimental effects.

As for the dermal-ds still uses it as well as epaderm.

I tried homeopathy which did nothing.I did notice a massive difference when ds stopped having milk (he refused) at the age of 2 when I changed form bottles to cup.
He refuses all milky products now but will eat melted cheese.When he eats a lot of cheese his eczema does get worse.
This is obviously different for every child though so can't say what would be casuing your babies eczema.Ds is a typically atopic child though,allergic to nuts/eggs , hayfever and asthma so all interconnected.

[chegirl]

Good news and I am so pleased you are feeling better.

My son is atopic like ggirl's DS. He is allergic to outside stuff like pollens and dogs and housemites.

Food doesnt seem to be an issue but I know of a few kids who are dramatically affected by dairy.

Once you have settled into a regime with LO it would be worth asking for allergy testing.

[Katisha]

The eczema in our house doesn't seem to be diet-related. It isn't always. I had allergy tests done and just about everything came up. Oh well.

My eczema is always worse in the spring when the sun starts to get warm - took ages to convinve the GP of this as he was convinced the sun would make it better. I always get it on the backs of my hands in the spring.

Haven't worked out a trigger for DSs really. I think their asthma is related to which allergens are in the air - pollens and such, but again it's been hard to be precise.

[foxinsocks]

betnovate is what we use here on occasion. It is v v good and I imagine the reason they want to see you back in a week is that you'd expect v immediate results with it (I doubt they will put her on that for long periods).

I would actually ask the Paediatrician/Dermatologist when you go back next week about potentially cutting foods out as it's always better to do it under medical advice tbh and as it sounds like they are interested, they will also want to manage her condition.

I am SO SO SO pleased that you felt you were listened to and they are taking an active interest in managing her skin

(fwiw, dd had dreadful eczema that cleared up with us cutting out dairy - she was then diagnosed with that allergy and egg and soya (via blood test and pin prick) so they were medically diagnosed allergies iyswim).

Please let us know how it goes. I really hope you see an improvement soon.

[mamatilly]

thankyou chegirl and ggirl for your support
it has all been so intense and for the first time in weeks i feel something might shift, at least in the short-term...
i picked up some rye bread, goats cheese and flaxseed/evening primrose oils so will try these as well for now... and guess buying that kitten will have to wait
x

[Katisha]

Definitely do not get a cat. Or a dog. Or a rabbit.

[mamatilly]

foxinsocks glad to hear you have good experience with betnovate... i am really hoping that these creams will shift the terrible sores and then we can look at a longer-term care-plan... will post again in a couple of days

thankyou everyone for all your kind support - you are all lovely xxxxxxx

[Tam60]

Hi Mamatilly,
I'm so glad too you had a good experience in hospital. Phew. Am sure you will learn more useful stuff when you go back next week.

Re: diet, I agree with foxinsocks that you shouldn't do anything without medical advice - especially when your baby is still little, growing really fast, and needing lots of nutrients!

I've never spotted a connection between diet and eczema with my DD and DS. I kept hoping there would be as it would be something within my control! but no.

I'd also be a bit wary of putting other things on baby's skin, at least until this flare-up has passed. I'd stick with what they prescribed for the mo.

By the way, have you discovered the eczema society website www.eczema.org/? you can get some useful factsheets from there.

Hope things improve soon.

[girlsyearapart]

Yes I would ask for a referral to the dietician at the hospital. Our dd s excema has dramatically improved in appearance (although not in itching) since cutting out dairy wheat and soya amongst others. After all what have you got to lose by having tests done??

[mamatilly]

well the betnovate has done wonders to baby's skin - inflammation right down, oozing completely stopped, patches still bright red but i guess these will slowly fade.. i'm like - why didn't a doctor do something ages ago instead of making it get into such a terrible terrible state...

back to the consultant dermatologist on monday for a follow-up and to talk with nurse about long-term care etc...

in the meantime i have dropped 99% wheat and replaced with rye breads, rice cakes, and dropped cows products and replace with goat!

i don't know if these were affecting anything but they are classic triggers so it can't hurt and its not restricting diet really at this stage.. will try reintroducing once baby a little older and all this drama is behind us.

x

[cuppachar]

Is your baby breastfed or bottle fed? Obviously if bottlefed, normal formula is cows milk based. If breastfed, if you're cutting wheat and cows milk out of your baby's diet you need to cut it out of yours too. However I would echo what the others said about getting medical advice on this if possible just so you can be sure your baby is still getting all the nutrients he/she needs.

Also if it is allergy-related, bear in mind the fact that most babies who are allergic to cows milk protein will react to the protein in goats milk too.

[mamatilly]

i am now doing combination breast and bottle, but have swapped to goats milk formula... i have read that goats milk proteins are closer to breast milk than cows milk, so less likelihood of allergies...

yes i will go visit a nutritionist/dietician soon...but in meantime just swapping cow to goat and wheat to rye just in case these might help....

another thread is talkng about a fitting to a washing machine specially for ezcema sufferers - would that be to do a deeper rinse to remove more chemicals from clothes?

x

[Katisha]

Don't know about special washing machines -
We use non-bio washing liquid, unscented if at all poss, and avoid fabric softeners.

We then do another shorter wash without detergent to make sure it has all gone.