let down by GP over baby's eczema

[soontobeamum1982]

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!

NotBadConsidering
It's a common misconception that eczema is extrinsic-driven, i.e. all down to allergy, food allergy in particular.

Is it? I found the opposite. Every doctor I saw as a child said I just have eczema. Nobody mentioned allergies. I did have known nut allergies so didn't eat nuts, but no doctor (not even a dermatologist) even once suggested I might be reacting to a food. I found out by chance when I eliminated dairy and egg as my daughter was allergic.
My eczema disappeared. That was after months of being told her own severe (head to toe weeping and bleeding) eczema was "just eczema". No suggestion of allergies either. I had to push for testing because she was so young, and just by chance an allergist took and interest in her in paediatric A&E and agreed to doing blood tests. She was off the scale allergic to dairy.
Every person I know that has eczema has it as a result of a food or contact allergy. I have contact dermatitis...on contact with fruit/vegetables. I can still eat them but have to prepare them wearing vinyl gloves. I also react to chemicals. I also have dust, pet fur allergies which cause asthma.

Agree that Aveeno is better than Cetraben.

Raisins18

The allergies co-exist. They're not causative.

www.allergy.org.au/patients/skin-allergy/eczema

www.eczemaclothing.com/

PP mentioned clothing - that was important for us as well to stop the itch scratch cycle.

E45 and aqueous cream (and dermol lotion) are all soap substitutes and shouldn't be used as emollients.

I meant the physical eczema, not the "being an atopic person". I'm not saying food "causes" a person to be atopic, but if you are an atopic person and eat a food that gives you an eczema flare then surely the best course of action is to remove that food from your diet rather than suffer the pain of inflamed and bleeding skin or smothering your skin in steroid creams. It is an allergic response to a food. You don't just have to live with being covered in eczema. My daughter's GP never suggested eliminating foods at all. When we did eliminate dairy and egg her skin cleared up. I'm sure that's been healthier for her than just treating her skin with steroids. Steroids don't cure czema. They dampen down a flare. It's temporary, until the next flare...ad infinitum.

Agree with all of the above help. GPs are fairly useless when it comes to eczema so push for a dermatologist consultation (although some of them aren't much better).

You could try Skin Salvation by Pure Potions. Many ppl have bad success with it. I like Aveeno as well, but sometimes steroids are necessary to calm down the cycle of infection from scratching.

We also had a water filter fitted as we have hard water in our area and that helped my daughter a little bit. I realise this isn't always possible.

but sometimes steroids are necessary to calm down the cycle of infection from scratching.

I agree - we did that, many different creams, food diary’s, elimination of common triggers and clothes.

At times it felt helpless but it did eventually help - avoiding triggers we could and breaking cycle of itch and scratch.

My DS had really bad eczema as a baby - no history of eczema or allergies in the family either. By the time he was 6 months old and we had tried many different things (including soya base formula) we went private to see a dermatologist (as the NHS waiting list was 6 months long at that time). A chance conversation with one of my DDs HCPs put us on to Aveeno cream which worked miracles (and had not previously been suggested by the GP - although it was not as widely available then as it is now). By the time we got to see the Consultant (still 2 week wait for private) his eczema was well under control and continued to be so with the addition of other Aveeno products. He's 21 now - still have very dry skin but rarely more than that - and won't use anything but Aveeno which we buy (he's a student) OTC at the supermarket.

Take photos of reactions. I was fobbed off by GPs who told me DS had sensitive skin when he was actually allergic to milk, eggs, nuts and sesame. I only got into the system by seeing a locum with a series of photos (and he is still in the system 8 years later as still allergic to eggs and nuts).

The NHS is so overstretched that you can't reasonably expect them to test for allergies unless you've observed some kind of reaction. The money just isn't there, nor are the fucks that they are supposed to give about patient welfare. If you can afford to pay for the test to be done then just go private.

It is an allergic response to a food.

No it's not, not in the vast majority of cases. A small percentage of people will have improvement after a removal of food. And terminology gets confusing: an "allergic" response means an IgE-mediated reaction. There can be an intolerance that can act as a trigger but that is not the same as an allergic response. No, steroids don't cure eczema, but neither does food elimination in the majority of cases. Natural evolution of the eczema over time is usually what fixes most cases. And I'm not saying to the OP don't exclude foods. I'm saying don't hang your hat on this at the expense of proper treatment. I see many children whose parents have spent months trying to improve their DC's skin with various elimination diets and after a week of steroid ointment it looks fantastic.

It's also much easier to determine what any potential triggers are when you can demonstrate repeatability. It's much easier to do that from normal to inflamed, than from moderately inflamed to possibly-a-bit-more-inflamed (but it's hard to be sure).

Steroids are safe and effective. The ointments are much more preferable. They don't cause skin thinning whe used properly.

theconversation.com/proper-steroid-cream-use-wont-thin-young-skin-study-971

I have to be honest Aveeno does nothing for either of my DC’s eczema. It’s just not thick enough.

We also struggled with the GP, fobbed off continuously until we paid for a private appointment with a dermatologist and were then referred to the NHS for continued treatment. Cut out dairy, don’t replace with soya as the proteins are similar. Keep a food diary. Don’t use bubble bath, you can wash with emollient creams and oilatum in the bath. Look at your wash powder too.

A mixture of the right steroids and emollients saved my DC skin.

Whatever you do please DO NOT eliminate dairy. I strongly recommend going to see a specialist.

I don't know where you are in the UK but we took our DD to this guy (he wrote the NICE guidelines for paediatric allergy) and her eczema is so easy to treat now and barely an issue. She is 10 now and started with eczema as a baby.

www.allergylondon.com

NotBadConsidering

It's not about what their skin looks like. It's about preventing it from becoming a painful and distressing mess in the first place.

Can I ask how you know that only a small percentage of people will have improvement after removal of food? Where are the statistics on this? It can be environmental triggers but it is (as far as I have researched, and especially in young children) most commonly a symptom of cows milk protein allergy, with egg and soya also being fairly common triggers.

Anecdotal photographic evidence here:
a) My daughter's "just eczema" when 6 months old whilst being "treated" with eumovate and epaderm,
and b) my daughter at just over a year old on a dairy free, egg free, soya free diet, and not even needing moisturiser on a daily basis.

Her skin is still peachy soft and she continues to be eczema-free apart from when she eats strawberries or other fruits that can trigger milder symptoms. She's under the care of an allergy team and we haven't yet been given the all clear to start the milk ladder yet as her allergy is so severe. She's nearly 4.

Yes - we found GP no good. We paid for appointment with private paediatric dermatologist who started us on new regime. I think we had private prescriptions converted into nhs ones so just paid for the appointments. We didn’t have allergy testing though as DS first got eczema over age of 12 months so less likely to be allergy related.

Raisins18

The link I provided above is the Australasian consensus. Here is the American consensus:

acaai.org/allergies/who-has-allergies/children-allergies/eczema

And here is a really good medical article on eczema:
emedicine.medscape.com/article/1049085-clinical#b5

Preventing flares is absolutely part of the treatment of eczema, but the evidence states food elimination plays little role in that. In fact, there's argument that the eczema causes the food allergy:

www.ncbi.nlm.nih.gov/m/pubmed/26897122/?i=10&from=atopic%20dermatitis%20cause%20food%20allergy

Personally I'm not convinced, I think they co-exist in genetically susceptible individual.

For my DC it is a reaction to wearing polyester, for me it was caused by stress (had it spreading on my hand for over a year and it went away in1 week after cause of stress was removed).
My DC also get a red rash similar to eczema when they get tomatoe juice on them, although they aren't allergic to tomatoes.
I think causes can vary, it is more complicated than just one cause for everyone.

Allergy testing is not often useful. Think about the most likely trigger if it seems to be food related eg dairy and cut it out 100% for 6 weeks or so. If eczema clears then that is likely to be the cause. You should also cut out soya at the same time.
Meanwhile try different moisturisers and emollients ; abandoning the ones that make it worse.
No soaps/ bubbles/ detergents.
Long sleeved cotton clothing and short nails.
Your baby should be greasy to protect their poor dry skin from germs getting in and infecting the eczema.
Your GP can prescribe creams etc and a mild steroid cream +/- antibiotic cream for infected or particularly bad bits.
National eczema society give guidelines regarding treatment.
This is almost always something that is very manageable . If it is allergic then eliminating will help but allergy is often not the whole story and management is the important part.
If your GP isn't helpful , can you see a different one in the practice. Infantile and childhood eczema are very common conditions usually managed very well by GPs .

Just this morning, I came across Chris Krossler of Functional Medicine, I'm only on the second chapter (of the audiobook) but its really making sense to me, that our current model of medicine just doesn't work for chronic conditions.

Wanted to pass on the link incase it is of use to anyone else here

I was in your situation about a year ago when my baby was 6 months.

I took DD to London to see Dr. Lack at the Shard. It cost a lot of money. They did some allergy testing that came back negative. But a negative test is not a real negative. He then wanted me to go across town to Mayfair for some blood draw (private, expensive). That could also be inconclusive. Then I was to come back to London in a few weeks for a food challenge (very, very expensive). All at the Shard. The waiting room was stunning. I don't mean to put you off private allergy testing, but just don't want you to think you'll have any answers at all after the first £600.

I just went home. I reintroduced foods slowly and she's doing better. It seemed I could spend a fortune and not really know anything. He did tell me not to be afraid of hydrocortisone. Twice a day now I check her skin and apply 1% hydrocortisone. I usually only have to get the same spot 2 days in a row, but there are always spots. I moisturise carefully with Aveeno and make sure she doesn't overheat.

Good luck. It is so stressful.

www.ncbi.nlm.nih.gov/pmc/articles/PMC4501604/

Good review here Raisins18

"A 2008 Cochrane review including 6 randomized controlled trials (RCTs) on egg and cow’s milk exclusion did not support the use of dietary eliminations, and specifically showed no benefit of cow’s milk or egg exclusion in children with AD. Primary outcome measures were change in parent-rated symptoms of atopic eczema within 6 weeks and the degree of long-term control, such as reduction in number of flares or reduced need for other treatments over 6 months"

NotBadConsidering

The trials mentioned only followed children eliminating dairy for 6 weeks. 6 weeks is the minimum time before any major improvement is noticed. My daughter still had eczema for several months after eliminating dairy. Took a long time for her skin to heal. She was eczema-free after 6 months, not weeks. They need to run longer trials if they want statistically significant results.

And we know my daughter is allergic to dairy and eggs (hives on contact). We were told to eliminate dairy and egg. It worked. She has repeated tests every year. Nothing has changed. She has never ingested dairy or egg other than via my milk, and her eczema disappeared when I changed my diet. 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.

They need to run longer trials if they want statistically significant results.

6 weeks is plenty really when you think about the functioning of the immune system logically. If it took 6 months of elimination for your DD's eczema to clear up, it's unlikely the elimination was the main driving force. We know eczema improves with time for most people anyway. They should do longer studies though. But until they do, and until that evidence is published, any advice about elimination diets lacks credible evidence and treating the eczema appropriately is required in the interim.

The bottom line of what I'm saying is there is no need for a child to suffer unnecessarily for fear of steroids when they are recommended as a first line treatment, are safe and effective, and work quickly for most people while other methods of management can be tried.