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!

My gp gave us loads of different creams on prescription so we could find one that worked for Ds. Aveeno was the best. We also had stuff to go in the bath

We had a similar experience with first baby. I really feel for you. Put us off having another baby for a few years.

His eczema was terrible, he kept getting infected raw patches, and he was constantly itching and not sleeping, and refused to try solid foods or bottles until almost a year. Looking back he had obvious allergy signs as well, puffy red eyes etc. This was just while on breastmilk.

We had to go for private allergy tests in the end and he tested positive for about 10 different common foods. There was no way I could have worked any of them out by adjusting my diet.

The GPs kept saying that eczema did not usually indicate a food allergy. I’m not convinced this is correct, and even if your child has just a small chance of allergy, if they are suffering desperately you want to get them tested!! And as soon as he was diagnosed with the allergies they all start talking about the correlation of allergies, eczema and hay fever. So contradictory and frustrating. In your case it is ridiculous as you have the genes on both sides.

I would really recommend going private for the speed. Even if GP refers to to an NHS dermatologist or allergist you could wait months for the appointment (our NHS derm referral came in about 6 months after we’d seen the private one).

The allergy tests do give a lot of false positives unfortunately (skin prick and blood tests) but at least you get some idea and because we were still breastfeeding I could eat small amounts of the allergens one at a time to sort of test them and perhaps de-sensitise him a bit (all very unscientific).

What helped with the eczema:

Push for the strongest steroid cream. We found things improved massively when we got prescribed eumavate instead of hydrocortisone. We only had to use it for a few days and then his skin improved for a while and he could have a break, whereas we would use hydrocortisone for weeks at a time with no improvement.

We didn’t use moisturiser at all when we put on steroid cream. We thought the moisturiser diluted the steroid and made it less effective.

Scratch sleeves. He wore these so much I was worried his fine motor skills would be affected but now at 4 his hands and fingers work fine 😊

Derma-silk body suit and trousers. A private dermatologist prescribed these, but I think we had to ask. The GP then agreed to prescribe more of the same in larger sizes as he grew. (They are about £90 a suit otherwise).

Hypoallergenic formula. We had Nutrimigen AA which contains no milk or soy proteins at all (amino acid based). Again very expensive if not prescribed.

We tried all the other remedies you read about but none of those worked... various moisturisers, oat baths etc.

I’m sure you are familiar with many of these given you and DH’s family histories but may help you or someone else in the same situation.

Don't be afraid of trying steroids. My DS had terrible eczema all over his body and the only thing that makes a dent in his recovery is steroid cream, plus moisturization.

We had the same with our eldest from 4-8 months was terrible.

I went to the GP about 5 times and eventually got a referral to the hospital for allergy testing and eczema clinic. The allergy testing was v useful as it identified mild milk and egg allergy. Eczema clinic not so good as it took months to get an appt so his was a lot better by the time we saw them.

We also used v mild steroid cream on prescription (not on his head or face but on body) as it was getting infected and it did help.

This is very hard for you, OP. And even harder for your daughter, of course.

Unfortunately, atopic dermatitis (eczema) is very difficult to treat: there are no medications that are safe & effective. This is why paediatricians/dermatologists have to rely on things like emollients (like the paraffin/gycerine cream you've been given for your daughter). They will sometime prescribe antihistamines like chlorphenamine (e.g. Piriton®), but this is more for sedation than for any useful effect on the skin inflammation. Even antihistamines are sufficiently worthy of caution that pharmacists are told not to sell them for use in children under 6 without a prescription. Steroids have deleterious effects on skin that mean they have to be avoided in young children so far as possible. And immunosuppressants like ciclosporin and tacrolimus (I guess your husband is on one of these) carry a high risk of severe kidney damage as well as making the patient prone to potentially life-threatening infections.

Your GP is not trying to save money, or refusing to help. He/she is avoiding prescribing dangerous drugs. It seems that your daughter needs to be having investigations for food triggers - and cow's milk does seem likely - but there's not an awful lot else that the GP can do.

Try to get a referral to eczema nurse/clinic. This happened to us 11 yes ago. Gp was rubbish and dd had eczema from 4 weeks old. I went off dairy as she was BF. At 6 months they tested her and it wasn’t dairy at all. We managed in eumavate, later betnovate, aveeno and piriton as a sedative. This was a blessing when dd was 10 months old and on her second try of salmon started swelling in the neck!! Salmon is thankfully her only allergy.

She’s largely grown out of eczema, gets it in fits and bursts. All my 4 dds have had eczema from very young ages and dd9 still gets it quite badly as she has ASD and we struggle to put creams on her.

Where in the uk are you? We went to see dr fox in london. Expensive but best thing we ever did. His whole body was covered in eczema and after 4 days it was gone. Found he was allergic to eggs and was given a steroid cream for his face and one for his body. He explained as soon as the skin looks like the eczema put the cream on to supress it. The damage from eczema is worse than steroids as you will only use it ocassionally. Best money we ever spent. Gp will not do allergy tests before 1 year. And they just prescribe the cheapest they can. Dr fox wrote to our surgery to say they have advised poorly and they must guve us the steroids on prescription. I then went to th gp nd argued with thw gp but the was givem it on prescription.
www.theportlandhospital.com/medical-professionals/find-a-consultant/childrens-services/dr-adam-fox/

Expensive but qish i had done it sooner. Ds didnt sleep ever. Slept ate bathed with socks on his hands as he would scratch and bleed. The only patch of skin that didnt have eczema was his genitals! He looked like a burns victim. Dr fox is very good xx

Try the pharmacist they may be able to help you find a steroid cream to calm the excema down use aveeno products to moisturise (2 of mine flare up with Johnson's products) I think the aveeno oatmeal one is good. Avoid eggs for now just wean with plain baby rice and 1 choice of fruit or veg for a few days at a time and keep a diary. Agree with p.p about cutting dairy but maybe try that before weaning

Try changing emollient. We had to trial umteen different creams/ointments before finding one that didn't make my daughter's skin worse. She was reacting to the ones with a high liquid paraffin content.
In my experience eczema is nearly always and allergic symptom. A person doesn't just "have eczema" (as one doctor tried to tell us about our daughter). It's not just about managing and treating symptoms. You very much need to eliminate triggers. Dairy/egg/nuts/soya seem to be the common ones, but at weaning we had big problems with various fruits, and especially fruit pouches (suck as Ella's) as they contained lemon juice. Citrus fruit is also one to be careful of.
We had to start weaning again from scratch, introducing one single food (ingredient) at a time, and waiting a few days for any noticeable eczema flare or hives before adding in anything new. It is a long winded process, but will save time in the end and help you work out what the triggers are.
In the meantime, Scratchsleeves are your friends! Bath your child in water only.
Good luck!

I’m 22 and they’re robbing me off with cetraben and antihistamines. Been using steroids for 10 years and it’s just getting worse.
There’s no cure and no one cares. It’s horrific.
They also refuse to give me an allergy test, or prednisone because I’m ‘too young’

They look at me like I’m making a big deal out of nothing whilst my skin is so itchy I literally scratch blood from the rashes and look like a fucking crack user.

I hate eczema and it’s dismissal.

Also agree that E45 is evil.

Sympathy, DD (5 months) is going through this. GP was happy to refer to dermatologist but both dismissed allergy testing in undee-1s. Dermatologist prescribed mild hydrocortisone which is immediately improving things, but it’s early days. Lots of emollient (Isomol) at every nappy change. Huge family history of eczema though.

Cut out dairy for two weeks. Difficult but a must imo.

Bleach baths worked wonders for my kids. When my daughter was little I sat in the tub with her.

www.mayoclinic.org/diseases-conditions/atopic-dermatitis-eczema/expert-answers/eczema-bleach-bath/faq-20058413

Haven’t RTFT.

You can’t reliably test for allergies before 2yo. It’s got to be empirical research of your own.

Cut out dairy for DD and for you if you’re breastfeeding her.

Introduce one new food at a time. Don’t worry about getting her onto solids on the same timetable as non-eczema suffering babies. It’ll happen in time.

Bleach baths every other day (15ml I’d bleach per 5 gallons of water). It’s actually preventative as well as disinfecting for open skin, research can’t figure out why. Same concentration as a swimming pool.

Don’t try peanuts until you’ve had baby tested for allergies at 2yo.

Lather on the cetraben or whatever works for your baby (for us Aveeno was hopeless but cetraben works a treat). Trial and error until you find the one that works. Aquaphor (if you can get t in the UK worked well for us). Use mild and gentle baby shampoo too.

Put socks over baby’s hands overnight to stop scratching. Never worked with mine, but it does for some.

Eczema tends to peak in babies around 5-6months, slowly improves naturally thereafter.

It’s a waiting game unfortunately. I have terrible memories of having to stand over my baby’s cot all night every night to hold his hands down for the first half of each sleep cycle. For newborns each cycle is 20 mins....

Take a look at eliminating dust mites as well as food triggers. My DS had multiple food allergies, but dust mites were the major driver of his excema. His was so bad that a nappy change would have him bleeding. Encasements on the mattress and no teddies etc, keep him clear of soft furnishings like sofas ( so sit him on your lap not directly on sofa). It made a huge difference

Yes - we got rid of curtains and put in blinds. No carpets. Nothing fluffy.

To this day when I walk into a room with loads of lavish curtains, cushions, deep carpets I still slightly gasp in horror.

Also we find that tumble drying everything to avoid pollen really helps.

Loads of good advice on this thread.

Nothing to add that hasn’t been said already, other than as a sufferer I agree with other posters, whoever designed E45 for eczema (or any form of skin issue) wants a slap.

That stuff burns! Nothing more than a commercial money making brand that you see advertised on tv all the time as if it were a face cream (surprised Davina McCall or that Holly Willoughby haven’t been put to touting that they “swear by” it). It’s nothing even remotely to do with skincare/health.

I have found success with Eurax cream and anything Aveeno.

Sanex have recently launched a line of “atopicare” products - washes, creams etc that are supposed to provide symptom/itch relief, I have the range but yet to use.

But unfortunately as mentioned by PP everyone is very different and what works for one may not for another - ie mentioned upthread someone must use Persil bio, if I use that one, my hands are flailing all over the place to scratch my body .

My Gp was the same but luckily my hv took it seriously and we were referred to an eczema clinic very quickly, they then referred us to an allergy clinic. Turns out DS has an egg allergy

Have you tried your hv?

It's a common misconception that eczema is extrinsic-driven, i.e. all down to allergy, food allergy in particular. The reality is the vast majority of eczema is intrinsic: related to genetic factors affecting the protein barriers in the skin. Food allergy is IgE-mediated. Atopic dermatitis is T cell driven. While there can be certain triggers, IMO too much time is spent on trying to look for those at the expense of proper treatment. When something is inflamed it needs an anti-inflammatory. For skin this means topical steroids. For the face this also means a non-steroid like Elidel. Strong steroids, when used appropriately are safe and very effective. The negatives have been vastly overstated in the past. By all means try exclusion-inclusion for triggers but get the GP to prescribe proper treatment. IMO experience allergists aren't the best at treating eczema as they focus on allergy. Dermatologists or paediatricians are better. I disagree with pp about solids. Latest research shows no benefit to waiting until introducing certain foods, including peanuts, in high or low risk infants. Histamine has very little role in atopic dermatitis, so anti-histamines don't work very well. Ask for steroids.

Dairy and fabric conditioner trigger ds’s eczema. He is also allergic to egg and gets a nasty rash. I was taking him constantly to the gp who finally referred him to the allergy clinic at 6 months (had to wait 4 months to be seen!!). Options that seem most sensible for you:

1. Keep a food diary, and remember that eczema is a delayed allergic reaction, therefore it may take a couple of days after eating the food to cause a reaction.
2. Eliminate dairy for a month, reintroduce it and see what happens.

Hope you find something that helps

DD and DH both have eczema and we’ve found Aveeno has worked a treat on both of them. On DD we use a baby emollient one and it’s worked so much better than either zerobase or the steroid cream that we were previously using on prescription. DH started using it too and his skin is better than it’s been in years.

That’s hideous and I feel for you. I had the same issue with my son when he was a baby... the GPS just kept saying that he would grow out of it. In the end I took him privately to a paediatric allergist... he had allergies to egg, nuts and sesame.... he hadn’t even been weaned fully at that point so hadn’t had any of those things. It was coming from
Whatever the adults were eating!!!
He was then referred to a dermatologist who prescribed steroids as the skin was so bad... we had a whole list of protocols to get it back to normal levels.
Go back and push for a referral... good luck OP. Your poor baby!
Also I have found that dermol/ q.v. gentle wash is amazing as a
Soap substitute... oilatum
Oil in the bath and then lots of cetraben/ q.v. moisturiser does the trick.

@lemonyssnicket

Sorry to hear that, I have been there too.

Worth trying to see a dermatologist if you can get a referal.

LemonysSnicket have you tried eliminating dairy and egg from your diet? Do it for at least a month and see if there's any improvement? I had eczema my whole life (severe behind my knees and elbow creases, extrememly painful). I went dairy and egg free so that I could breastfeed my baby who was reacting to dairy and egg (flagged through blood tests) and my own eczema disappeared! If only I'd known sooner I could have saved myself 35 years of eczema misery!