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Unhappy with doctor's advice

(29 Posts)
FirstTimeMama21 Mon 18-Mar-19 14:44:41

Hi all

My daughter suffers with severe eczema on her face that can only be controlled using hydrocortisone cream. The GP referred her to a specialist- community not hospital. The dermatologist we saw originally gave us some advice and said that if there was no improvement then at the follow up appointment he would refer her to the hospital.

At the follow up appointment today we saw someone new. He said her eczema is not active. I explained that it's only because I'm still using the steroid cream and that the course if action the last doctor had advised us to take hadn't worked. He then gave his own advice- to reduce the use of steroid cream to once a day. I explained that we had already tried this under the GPs advice and that it doesn't work. Her eczema becomes infected very quickly. He has still said to reduce it and has prescribed a stronger steroid cream in case reducing it causing the eczema to flare up.

I just feel like I haven't been listened to. The first specialist seemed to be in agreement with the GP that we need to reduce the use of steroid cream. He had advised to do this really gradually by slowly diluting her night time application of hydrocortisone with moisturiser. The gradual removal didn't work and now this new doctor is telling me to completely stop the night time application. This is obviously definitely going to lead to an eczema flare up and I'm unhappy that the answer to this is a stronger steroid cream.

She is not due to see another specialist for two months now. What can I do if I'm unhappy with this advice?

Feeling really fed up.

Drogosnextwife Mon 18-Mar-19 15:50:03

They probably want to get her off the steroid cream as quickly as possible because it's not great to use long term as it things the skin. If she is quite young then it's best to try taking them off the cream for a while as childhood eczema is really common and they can grow out of it. Hopefully they will be up with a solution for you, i know it can be an awful condition to live with and to watch your child suffer is horrible. Fingers crossed for you.

Iggly Mon 18-Mar-19 15:51:26

Has anyone been able to work out the cause of it? Diet? Environmental factors? It’s worth pushing for ideas and see if that helps otherwise you’ll only ever tackle the symptoms.

DianaPrincessOfThemyscira Mon 18-Mar-19 15:54:56

Unfortunately there’s not much you can do about eczema. They’re right to say reduce the steroids - it thins the skin and causes rebound eczema.

I say this as a long term sufferer. At one point I was waking in the night crying with pain with bleeding hands but all I could get was hydrocortisone, fucibet when infected.

DianaPrincessOfThemyscira Mon 18-Mar-19 15:55:13

How often are you applying it to her skin?

steppemum Mon 18-Mar-19 16:00:45

Wait, did no-one read the OP?

They said reduce the steroids and then, if it flares up use STRONGER steroids, so this isn't getting her off steroids!

Drogosnextwife Mon 18-Mar-19 16:05:10

Yes but obviously they want to reduce them first to see if the OPs DDs skin has calmed down and is healing itself, if not they will need to take a different action. Why else do you think they are cutting them back first?

Darkstar4855 Mon 18-Mar-19 16:16:23

It sounds like he wants her to have short courses of a strong steroid cream just when she has flare ups rather than continuous applications of hydrocortisone. Presumably he is hoping that this will reduce the overall amount of steroid cream that she is using?

It sounds worth a try to me. As you say, reducing the hydrocortisone alone didn’t work so surely the next step is to try reducing it but adding in something different for flare-ups.

cloudymelonade Mon 18-Mar-19 16:23:03

I've been an eczema sufferer for many years and increasing the strength but reducing the usage of the steroid cream I was using was excellent. I suffer far fewer flare ups and when I do get them, they clear up a lot quicker.

Seniorcitizen1 Mon 18-Mar-19 16:39:51

It is only advice not an order

Mouikey Mon 18-Mar-19 16:45:36

There is an excellent childhood eczema support group on fb with lots of helpful hints and tips.

user1468348545 Mon 18-Mar-19 16:51:01

Have you tried child's farm baby moisturiser? I saw an article on the daily fail about a woman who's severe eczema was improved dramatically through use. I bought some as DP and DS suffer with it especially in winter and sure enough a major major improvement. It's all natural so can use on face. I do just to moisturize!! May be worth a try.

FirstTimeMama21 Mon 18-Mar-19 17:39:31

Thanks for all your replies.

I am bf and have been dairy free for 4 months now. When I ate dairy just to see what happens DD got a big hive on her face. I also gave her some formula milk with dairy as a trial (advised by GP) and she got hives and blotches on her face and neck. So it's clear that she is sensitive to dairy but removing this doesn't clear the eczema up or stop it from returning when we stop using steroid cream.

I think I'll just have to give it a go. He said to reduce the hydrocortisone to once a day which will definitely cause her to have a flare up. Then I'll try the stronger stuff for a week as suggested but if that doesn't work I'll just be at a loss as she doesn't have another specialist appointment for 2 months. I know I can see the GP but I'm not sure I can make an earlier appointment to see the specialist?

user1468348545 I have tried childs farm as she also gets mild eczema on her body. It works for that but sadly not for the severe eczema on her face.

PragmaticWench Mon 18-Mar-19 18:19:27

It may be that you DD has other allergies aside from the CMPA. DD's severe eczema continued after I cut all dairy, until she was allergy tested and found to be allergic to egg and soya as well.

The advice to reduce the hydrocortisone and then use the stronger steroid for flare ups is the best-practice advice. It won't sort the cause though.

The caution about steroids thinning the skin aren't completely accurate. It does thin the skin but only short-term, there's lots of research to back this up. We were told this by the leading dermatologists at Great Ormond Street when DD was there for her eczema as a baby.

hopefulhalf Mon 18-Mar-19 18:23:31

I know this sounds mad, but have you tried putting breast milk on her cheeks ?

Mylittlepony374 Mon 18-Mar-19 18:36:19

www.frankieapothecary.com
Kawakawa Balm.

FirstTimeMama21 Mon 18-Mar-19 18:43:44

PragmaticWench Since starting weaning I have found that DD is sensitive to egg but the doctor said I don't need to cut it out of my own diet? I have been soya free since being dairy free.

She also got a hive today after eating sweet potato!!

Have tried breast milk as well as various creams and ointments.

Thanks again for your replies.

Iggly Mon 18-Mar-19 18:48:38

I’d ask for a referral to a paediatrician with reactions like that

Dairy is hidden in a lot of foods - when going dairy free I couldn’t eat a lot of processed food!

Wearywithteens Mon 18-Mar-19 18:48:57

My dd was on hydrocortisone for years when she was little, we would wet wrap her sore arms every night and try and treat her raw neck until we insisted to the gp that she saw a dermatologist. Gp was resistant saying ‘there’s very little more they can do...’

Fast forward to the dermatologist - she had quite a harsh bedside manner but told us that basically years of low dose steroid had done nothing to cure the eczema but had just prolonged the exposure to steroid on a delicate child’s skin. She prescribed a high dose steroid to be used liberally (not sparingly) but only while the skin was inflamed (thus effectively ‘treating’ it).

It literally took days to clear up what had been torturing my dd for years! Afterward she only had the odd flare up once or twice a year (mainly when she was stressed) and just applied the steroid until it cleared again.

There is a lot of conflicting advice on this thread already but that was a miracle to us.

kbPOW Mon 18-Mar-19 18:48:59

My children were adversely affected by me eating eggs and passing it on through breastmilk. Doctor said this wasn't the case but it absolutely was. Might be worth a try?

Justonemorepancake Mon 18-Mar-19 18:51:25

You definitely should cut egg out of your diet.

Justonemorepancake Mon 18-Mar-19 18:53:36

www.verywellfamily.com/hidden-dairy-ingredients-for-babies-with-milk-allergies-284300

Bubblysqueak Mon 18-Mar-19 18:56:22

We found moogoo cream brilliant for ds's eczema when he was small, we went from using steroid creams daily to once or twice a year (usually after swimming on holiday).

We also use it along side moogoo natural suncream as normal suncream is a nightmare for his skin.

DontFundHate Mon 18-Mar-19 18:57:20

You need to see someone else. Cutting things out of your diet and your LOs diet without medical advice isn't the best idea. I hope things get better really soon op

MitziK Mon 18-Mar-19 18:58:17

A friend of mine ebf her kids and her son had horrendous eczema. It took cutting out dairy, soya, eggs, gluten, nuts, kiwi and cleaning the house from top to bottom every day without fail for three months before his skin settled down - but in that time, it worked better for him to stop using the 'normal' HC cream and only using tiny amounts of the stronger one on the worst bits (he was pretty much head to toe, but this initially flared and then reduced with the switchover).

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