AT THE END OF MY TETHER HELP

[Beepop22]

So I’m hoping to find any answers anything helpful at all ! Currently sat here with my screaming 6m old who won’t settle who is otherwise an amazing baby because she has severe eczema which is being caused (I suspect) By CMPA… please please please does anyone have any suggestions on next steps

I have tried the following:
scratch sleeve clothing
diprobase
epaderm - entire range
aveeno
Nutramigen formula (baby will NOT take it)
zero base
beef tallow
coconut oil
oilatum bath oil
oats in bath
???? am I missing something , these are all the things I’ve tried and I might even be missing some but it seems she is not getting better her skin is that bad people stop and stare and it she looks like she’s been to war the amount of flakes scabs and dry skin is crazy ! All over her stomach hands legs arms… so much to the point I have to pre warn people why she’s out wearing socks on her hands in public lol - it is that bad she broke out of her socks on hands at night scratched herself half to death I woke up in the morning her crib mattress was covered in blood and her arm was red rAw with the skin ripped off. DOCS are useless PELASE HELP ME!!! TIA

Why are you washing her clothes/towels/bedding in?

Lush Dream Cream and washing everything in Fairy non-bio helped us.

And many years ago, when mine was little, we found that the usual creams didn’t work, but Elena’s Nature Collection did.

So sorry, this sounds awful :( my boy has eczema, not as severe as this sounds but he has small patches that are bad and has ended up with impetigo. I refused initially but the ONLY thing that worked for him was steroid cream, to get a handle on it. Has the GP suggested that?

How often is your little one being bathed? At that age we were just doing once a week with water. No bubble baths. Now he has more frequent baths as his skin is much better and he has Dermol 500 lotion in it.

Agree with the other posters about non bio. I've been using the EcoVer Zero range. There's other wash products that have the British Allergy approval too. Worth a try.

Have you tried your little one sleeping in 'scratch sleeves'?

What is she being fed on?

I realise she's only tiny, what is her diet? Could there be anything she's allergic/intolerant to?

Can you get advice about trying something else eg moving to dairy free milk?

I was terrible as a baby and child, as an adult I've learned I'm intolerant to a lot of foods (and stress and lack of sleep) which make my skin flare up.

Topically, aloe Vera, chamomile, a zinc based talc?

See the GP and request a referral to a dermatologist. My DD was just like this and nothing we did helped. We were prescribed something called Protopic, only available via dermatologist. Her skin cleared up within weeks and now at age 5 you would barely know she has eczema.

You need to go back to the doctor and get proper medical strength creams and steroids. Also try evening primrose oil which helped my DD. If you suspect a food allergy you need to ask dr for referral for paediatric allergy testing. It is likely to be affected by the hot weather too so keep your DD as cool as possible - get a fan for her room, ideally a Dyson or an air filter one in case it's a pollen allergy. Don't use fabric softener, use the gentlest non-biological soap powder, dry all clothes indoors. There are lots of allergy/eczema websites which have useful products/emollients you can try. Might she be allergic to egg as well?

To give you an idea - one photo taken in November. We saw the dermatologist in early January and the second photo was taken at the end of March.

Weleda bath oil (not the cream one) for baths every other night. I bought the special eczema therapy gloves to put over my daughters hands along with Aveeno baby dermexa cream which did seem to help. I see the now do Baby Eczema Therapy cream which may be worth a try too?

To alleviate symptoms for CMPA you need to cut out all exposure. What is baby fed on? I breastfed and went dairy free for 4 years, my little one has none ige CMPA and has now reached cheese on the milk ladder so there can be a way back to normal, it just may take trial and error to work out symptom management to alleviate discomfort and then patience to let issues calm down before very slowly reintroducing following the milk ladder. I hope you can find ways to improve things for you and babys comfort

Insist on a referral to paediatric allergy.

My little boy is the same. Only topical steroids seem to touch it but he’s covered.

keep going to the GP. I take photos as well. We’ve changed to non bio washing powder and no soaps etc but it’s not changed much

Obviously you need to get to the bottom of whether your little one really does have CMPA. Since you think it might be that, I presume you're trying exclusion?
If she's BF then you also need to go onto a dairy free diet until she's fully weaned.

If her skin is that bad then I second asking your GP for a dermatology referral, but that can take ages to be seen, there are real issues in some parts of the UK with dermatology services - they just don't exist!

In the meantime, keep going with the oat and oilatum baths, and with moisturisers. NEVER use any bubbles or soaps of any type on her skin, no matter how "gentle" the manufacturers claim it is. Many people don't use enough moisturiser - you need to slather her in it, it's quite possible that you need to use a lot more than you think you need. The best time of all to moisturise is after a bath; warm water (not hot), then pat her half-dry and smother her with whichever moisturiser seems best to you. Leave it to soak in. Aim to use at least 500ml per fortnight; more will be better.

There are loads of moisturisers and which one suits best is a question of trial and error. Lotions spread more easily but are thinner. Creamy ones soak in better. Oily ones give a better barrier. Ultimately the best moisturiser for you and for her is the one you like to use the most of.

Wet wrapping is fiddly and seems to have fallen out of fashion a bit but can work wonders to get you over a bad patch:
nationaleczema.org/eczema/treatment/wet-wrap-therapy/

Nothing made a lot of difference for ours until we cut out both milk and soya and then it cleared up like magic. If you think it's allergy it sounds like you may need GP to try prescribing different allergy formulas to see if it improves on them. I hear GPs aren't always keen to as it's expensive, if so a food diary eg a few days on lots of dairy where skin worsens then a few days with minimal dairy/soya (appreciate you have to give formula) where hopefully it's not as bad along with photos of skin on both diets might help persuade. They can also prescribe creams etc.

I'm so sorry OP, what you are going through is utterly horrific, speaking as a mum to a 7 year old who's had chronic eczema since birth. You need to treat the eczema with steroid cream or protopic cream (a cream which works in the same way as a steroid but is not one). Emollient cream/moisturisers (all the creams you've listed) don't get rid of existing eczema, they just need to be applied daily to add a protective barrier to the skin. Emollient is a preventative method not a treatment. Are you not under the care of NHS dermatology unit? If not then get a GP appointment in the morning and ask for an urgent referral, and also ask for a prescription for steroid cream. Hydrocortisone is the weakest and won't work on eczema as severe as what you're describing. The next strength up is Eumovate, then the strongest is Betnovate. All the dermatoloigsts say it's better to use a strong steroid for a short time than use a weaker one (like hydrocortisone) for ages. And there is research that shows fears about steroids thinning the skin are unfounded - skin only gets thinned if very strong steroid is applied with a bandage over the top for a long time period.

You need to apply the steroid in a thin layer twice a day until the skin is completely smooth. If any of the eczema has become infected then you will need an antibiotic and/or antifungal cream for that area depending on what's happening on the skin. GPs can be really useless with eczema though - so make sure you get that dermatology referral.

If you think she has a cows milk allergy then please also get a referral to the paediatric allergy clinic. If not you must get that referral too. She needs to have the skin prick test for all the eight main allergens. If she is breastfed and you are eating things she's allergic to then she will continue to have severe eczema no matter what you do. My second child was also allergic to cow's milk and wouldn't drink nutrimagen. I gave her oat milk. Now your baby is 6 months you can do that too if she is starting to eat solids.

The only other two things that have made a big difference for us that aren't on your list are bleach baths with miltons sterilising fluid (this is a recommended practice, particularly for eczema sufferers who get a lot of infections like my son does www.westhertshospitals.nhs.uk/patientinformation/documents/dermatology/00294_02-18v01%20Cleansing%20baths%20for%20eczema%20Patient%20Information%20Leaflet%20FINAL.pdf), and installing a water softener.

Oh also I only use Surcare washing powder which was developed for people with skin conditions and is recommended by the National Eczema Society. Make sure you do extra rinses and obvsiouly don't use any fabric conditioners or anything.

And don't use any soap or shampoo, wash her skin with Dermol 500 lotion

Good luck and please do send me any questions, after 7 years I have tried so many things and read SO much peer-reviewed research on eczema!

Start taking. Decent probiotic and cut out dairy.

Our little one has the same, hospitalised several times with skin infections , where skin went from normal to infected in a matter of hours.

Baby is EBF so we didn't have the issue with finding a formula that was allergen free, but I cut out the following allergens from my diet, and now also baby's diet:

Dairy
Egg
Soya (now reintroduced)
Gluten/wheat
Nuts
Sesame

We also changed washing liquid to surcare, no conditioner. Set to the maximum number of rinses for the machine too.

We only bathe baby when really really needs it. The hospital said to bathe daily, but their skin is 10000x worse after bathing.

Baby's skin mostly cleared within 2-3 months (takes up to 8 weeks to get out of everyone's systems).

Baby is weaning now and finding they regularly get triggered but, I'm assuming, unknown allergens or contamination. But this is far more manageable.

In terms of management, we are now off steroids completely and our routine is ..

Morning and night we have three steps:
100% Aloe Vera all over to add moisture
Then
Aproderm all over the top
Then
50/50 to seal the moisture in.

Piriton daily at night to help with itching and sleep. We also found cetirazine worked well but you can't get that for babies in the UK (we got it when abroad where you couldn't get piriton for babies weirdly!).

During the day we just use the Aproderm at every nappy change.

Everything but the aloe is on prescription.

We add dead sea salta when baby does bathe, and add nothing else.

We also used probiotic since birth due to all the antibiotics baby was having to have until we got the eczema under control.

We also had blood allergy tests following the hospital admission (which confirmed ige-allergy to dairy, wheat, eggs and sesame, but didn't test nuts which baby 100% reacts to. Tests said no allergy to soya which we have reintroduced, but there is still potential for a non-ige reactiona to that and other things - which won't show on any allergy test). We also had paediatric dermatology referral (yet to be seen by them, been waiting since January!).

Also note, current advice is don't add anything food related to skin until it is eaten in normal quantities, as it can lead to more allergies.

Also strip your washing machine, if you put detergent in the drawer over time the pipes get clogged with detergent.

I've had a few domestic engineers to tell me that and then only put detergent in the drum.

Doing that to a baby, without proper medical advice is a very dangerous suggestion.

Many children who are allergic to milk are also allergic to soya so you really need proper allergy tests. Oat milk doesn't provide the nutrition that babies need. Take a look at the Allergy UK and Anaphylaxis Campaign websites. Don't use rice milk or almond milk - they are not recommended for babies.

Echo steroid creams, and referral to pediatric derma and allergy

try also adding dustmite encasements to everything LO touches or sleeps on and steam clean carpets curtains and teddies (remove as many teddies as possible)
then vacuum with a hepa filter

have you tried nutramigen with a smidge of sugar…it makes it just a bit more palatable and then you can dial down the sugar when they are used to it

you can also try Aptimil pepti 1 which is hypoallergenic and has a different taste

Would you beable to afford to go private? My Grandaughter recently developed an intolerance to something , awful skin problems and runny poos. NHS have been hopeless, so DD went private and they’ve been brillant. It cost about £300 and is well worth it.

It’s a systemic problem, shoving a load of chemicals on your skin for something that is going inside can be very dangerous too! You need to find out why and generally it is the stomach and dairy with eczema

Of course it's systemic and something going on inside, which you have to figure out, to stop the eczema from continuing (and while dairy is often an issue, it's not true to say it's "usually" dairy). But you do also have to treat what's going on on the skin once it's already at the horrific stage the OP is describing. Failing to do that and focusing only on what's happening inside will not fix the severe eczema already there and would leave the baby suffering longer. Everything is made up of chemicals, even "natural" products.

You need to see a paediatric dermatologist. Our GP was kind but not very helpful when DD got discoid eczema as a 16 month old. Her back was raw, bleeding and crusty. We went private, saw the consultant, got a steroid prescription, got on top of it and touch wood all is fine.

We have private healthcare but I think a consultation is around £200 or £250.