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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

let down by GP over baby's eczema

139 replies

soontobeamum1982 · 18/02/2018 15:50

Argh i'm so fed up and upset. We have a family history of asthma/eczema/allergies on both sides so have been looking for it. Until now DD (6 months) has had eczema very mildly, and controlled by moisturising etc. Now we've started weaning it's kicked off badly - all over her face, swollen eyes, worst under the chin where skin in now peeling. And this has come from nowhere in under 2 weeks. Been to the GP twice and they just say keep going with Cetraben. Meanwhile it's getting worse, she's not sleeping or feeding properly as so irritated, she's refusing all solids (not that she was that interested from the off).
Took her to out of hours last night as her face was terrible and she also had a rash spread all over her. They gave some piriton but otherwise unfussed and said no point in allergy referral. Why not?
I'm going back to my GP tomorrow ready for another fight, but at this point I'm thinking of paying for a private allergy consultation as I really want to get to the bottom of it before it becomes so widespread it takes years to get rid of.
I'm not over reacting - DH has lived with terrible eczema all his life, has been hospitalised with it in the past, has to take the same immune suppressants that organ transplant patients take daily in order to keep it under control (and has to have his blood tests every month to check they're not wrecking his kidneys). Meanwhile I have food allergies and am terrified about weaning - daren't introduce egg or anything.
Why the hell won't they help? I've paid tax all my life (and lots of it) and now we need support I'm looked at like a panickly first time mum.
Gah.
Does anyone who has had a similar experience have advice? Any miracle cures? I'm 99 per cent sure it's CMPA at this point!

OP posts:
Prezel1979 · 20/02/2018 19:17

I totally agree with BluebellTheDonkey. I would not bother cutting anything out in the first instance, it’s all speculative without a doctor, and I certainly wouldn’t stop weaning. Go to a good dermatologist. If you have to go private, go to one you have had recommended for this issue. After trying many doctors and many different creams I finally found a dermatologist who just said “I’m now going to give you something that will work”. And it did. She had the pharmacist mix me two creams of her own recipe that were much thicker than anything I’d seen before and they were fantastically effective.

Ructation · 20/02/2018 20:46

another Dr said it's really important to keep going or she could end up with some kind of developmental delay

I can only speak for my DD but she has no developmental delay from weaning late. She's 14 so I think we'd be aware by now if there was going to be an issue.

Slowing down the weaning really helped her recover from the initial horrendous eczema that appeared during the early weaning days.

NotBadConsidering · 21/02/2018 11:39

Raisin18

NotBadConsidering, I suspect you are not a parent of an atopic child

I am atopic, one of my 4 DC is atopic and I am a paediatrician who sees atopic children daily in my practice. My practice is guided by evidence. Evidence states an unclear relationship between food and eczema. It is not known which is cause and effect. They most likely co-exist. Skin prick testing or RAST blood tests are not tests for allergy. They are tests for sensitisation. If a child has one of these tests and it returns a positive result it means the child's body is sensitised, not allergic. Allergy is determined by how the child reacts when a food is consumed or directly in contact. Too often I see blanket skin prick testing done on children and they are told they are "allergic" to foods that they have already eaten without problems or never tried. Follow up food challenges aren't done. Children end up excluding foods for years based on these results when it's completely unnecessary. I also frequently see in my practice children with eczema whose parents spend a disproportionate amount of time excluding, in a poor fashion and with poor technique guided by people on the internet, to the detriment of the skin. The natural timeline of eczema is never considered. I've seen infected, lichenified eczema that has been there for months resolve in a week when appropriate treatment such as steroids are applied. The vast majority of parents I see who try elimination see no change or difference in their child's skin and come to the realisation that their efforts haven't produced reproducible results to confirm a direct correlation.

So you may think I am not qualified to comment because "I am not the parent of an atopic child". I think you're not qualified to give out general advice to everyone just because you've had one atopic child, whereas I've seen hundreds if not thousands over the years.

NotBadConsidering · 21/02/2018 11:57

OP all I'm saying to you is nothing bad will happen to your DD if her skin is bad enough to need steroids. You can still do elimination, still spend time looking for potential causes, still keep a food diary etc, but a proper treatment course will mean that your DD's skin is healthier and more comfortable while you're doing all that. As I said above it will make changes with food easier to detect as the skin flares will be more noticeable if the skin is going from normal to inflamed, as opposed to inflamed to a bit more inflamed. If things get bad, ask for a steroid ointment. Good luck.

Raisins18 · 21/02/2018 12:02

So you may think I am not qualified to comment because "I am not the parent of an atopic child". I think you're not qualified to give out general advice to everyone just because you've had one atopic child, whereas I've seen hundreds if not thousands over the years.

I didn't say you weren't qualified to comment, did I? I just got the impression you were a medic rather than someone with an emotional investment in an atopic child. Just curious. Clearly I was half right and half wrong.
What general advice have I given out that other than try a different emollient and join a fb support page?

2kidsnopets · 21/02/2018 12:08

My friends DS has eczema, they suspect it may be related to dairy but friend doesn't want to cut it at the moment because she's a super picky eater and it'll limit diet drastically.
Doctor prescribed emollients and steroids and it didn't improve at all. Funnily enough switching to childs farm products has made a massive difference and his skin looks loads better.

ohhereweareagain · 21/02/2018 12:17

You have my sympathy op Flowers. I've been there and like some other posters we ended up having to go private as gp/hv had nothing much to say if anything outside of aqueous soap and bloody oilatum. As i type this dd15 has a bad outbreak around her eyes which is a tricky area to deal with. Went to gp a month ago who said to put diprobase on it. May of well asked the cat Hmm. Best of luck. Fwiw it does get better for most sufferers. Dd grew out of it mostly after 3/4 years. She had it over 95% of her body from a few weeks old until months when with a strict treatment regime it improved 80% within 2 weeks. Pm me if you want the exact routine

NotBadConsidering · 21/02/2018 12:20

There is a facebook group for parents of children with CMPA and eliminating dairy and ither allergens is the most effective way of controlling reactions, whether allergy or intolerance. Parents don't need randomised clinical trials. They can see for themselves what works. The biggest hurdle is finding out whether dairy is the allergen in the first place.

With this your saying that the people in your Facebook group know more than the consensus groups of all the paediatric societies around the world. You've disputed published evidence ("trials not run for long enough") that states the relationship between food and eczema is not clear, based on your personal experience and that of your Facebook group. You've advised that steroids didn't work for your DD, suggesting they weren't the answer and elimination was, even though the steroids you posted a picture of were suboptimal. Your posts have been all about elimination as something that has to be tried, which is in direct conflict with eczema treatment guidelines around the world.

Like I've said, elimination plays a small role in the management of eczema and should be medically guided by someone sensible. Not a bunch of people on Facebook. That's how babies end up eliminating things they don't need to for much longer than is necessary.

Raisins18 · 21/02/2018 12:26

As I said above it will make changes with food easier to detect as the skin flares will be more noticeable if the skin is going from normal to inflamed, as opposed to inflamed to a bit more inflamed

I know this is your advice as a medic to the OP, however this did not work for my dd. She reacted to all the creams/ointments/steroids. She was tested in hospital by the allergy team. Until we stopped using the creams her skin was constantly inflamed. The only thing that somewhat temporarily relieved her raw cheeks was Daktocort, but we could only use it for a few days and as soon as we stopped her cheeks flared up again, because at that point I was still consuming dairy and egg. I can't see how continuing to eat something that causes such awful skin reactions is OK as long as you are masking the reaction with longterm steroid use. How can that be healthy?

NotBadConsidering · 21/02/2018 12:27

ohhereweareagain

Pimecrolimus (Elidel) is an option for treatment for facial eczema where steroids are contraindicated. Ask the GP about that if it doesn't improve.

TheLambshankRedemption · 21/02/2018 12:29

It is an itch scratch rash cycle. It is key to prevent the itch.

Our 'miracle cure' after months of horrific forehead to toes eczema was wet wrapping at night which were tubigrip long sleeved vest and tights (on prescription) dampened, and worn under cotton pyjamas/sleepsuit as well as a suitable emollient. They had a dramatic impact on improving the situation.

The reduction in itchiness reduces scratching thereby reducing formation of the rash.

Steriod cream was also good on severe spots.

I've read that hardwater can aggravate eczema too which I didn't know when our child was little or I would have tried cutting down on daily baths.

Raisins18 · 21/02/2018 12:29

evidence ("trials not run for long enough") that states the relationship between food and eczema is not clear

How can you call that evidence? That's evidence of needing further studies...not of best practice!

NotBadConsidering · 21/02/2018 12:30

however this did not work for my dd

Sigh. Your DD's experience is not typical! You can't recommend against this because of your singular experience! The OP needs advice based on likelihood and probability, not single anecdotes of tricky difficult cases that don't follow the standard path. You know steroids didn't help your DD because you tried them. How will the OP know if she doesn't?

Raisins18 · 21/02/2018 12:31

You've advised that steroids didn't work for your DD

That's not the same as givong advice. I've just talked about my own dd and what happened to her. It's a discussion!

Raisins18 · 21/02/2018 12:32

I haven't told the op not to use steroids!

NotBadConsidering · 21/02/2018 12:38

How can you call that evidence? That's evidence of needing further studies...not of best practice!

This issue has been researched for years and no one can produce anything conclusive. It's not like no one's tried and longer studies haven't been done. There is no evidence. If someone produced a study comparing two treatments with outcomes compared at 6 months, the statistics would be open to question as to how much was natural improvement.

NotBadConsidering · 21/02/2018 12:39

So you think the OP should try steroids first?

Raisins18 · 21/02/2018 12:41

Ok, so I haven't disputed published evidence then...Hmm

NotBadConsidering · 21/02/2018 12:43

Yes you did. You don't think 6 weeks is long enough to be sure. Even though the study designers and logical understanding of the immune system says that it is.

Raisins18 · 21/02/2018 12:43

OP's child was prescribed Cetraben and Piriton. No mention of steroids. If their GP isn't prescribing steroids then it doesn't matter what I think about it.

Raisins18 · 21/02/2018 12:45

NotBadConsidering but the results of the study were inconclusive, so how am I disputing evidence when there wasn't any clear evidence of anything?

NotBadConsidering · 21/02/2018 12:47

But steroids are a reasonable thing to consider as part of first line treatments for eczema aren't they?

Raisins18 · 21/02/2018 12:48

If a woman is eating dairy and breastfeeding an atopic child but then stops eating dairy and continues to breastfeed the child, it can take over 6 weeks for any improvement to be noticed because of residual cows milk protein in the mother's milk.

NotBadConsidering · 21/02/2018 12:51

so how am I disputing evidence when there wasn't any clear evidence of anything?

The Cochrane review showed no benefit of elimination on eczema over the course of 6 weeks. That is clear evidence of no benefit over 6 weeks. You dispute this because you think 6 weeks isn't long enough. Even though it is because if a food is removed there is no way it can still be causing problems and triggering the immune system 6 weeks later.

Raisins18 · 21/02/2018 12:56

Oh dear. Going round in circles here. Steroids dampen down a reaction but if you are weaning a child and they seem to be reacting to every food then you do not have time to wait for the skin to clear with steroids before trying the next food, given the advice we get from dieticians. Put it this way, if you gave your child Piriton every day whilst weaning you'd likely miss any allergens as the reactions would be masked. That's why we are told not to use it (or steroids) before skin prick tests. Yes steroids can treat symptoms. That's not in dispute. Longterm treating symptoms is less preferable to eliminating triggers and therefore eliminating symptoms though, surely?