To demand a referral for eczema !!

[HJWT]

My poor DD is 2, almost 3. She has had eczema for 18 months and has not had a day since without it! Now don't get me wrong its not that bad compared to some children its only on her wrists inner side of elbows and a few patches round her body. Doctors have given me anti fungal & steroid creams when its angry and fobbed me of with other stuff to help the dryness that never works.

We started using La roche posay and before that tried 100's of pounds worth of creams, not that this stuff is cheap its £16.50 and the sun cream is £11 but it seems to stop it getting angry but still very dry!

ANYWAY every time I ask for a referral they tell me she will 'grow out of it' but its got to a point now were my poor baby is waking up in the night crying itching herself! Last night she was awake 12.30am-5.30am because it woke her up! She went to sleep tonight and again she is awake itching and making her wrist bleed 😔

I have started giving Piriton twice in the evening before bed but it isn't helping.

I am so exhausted! Obviously I cant leave my toddler to sit up alone for 5 hours in the night so I am losing sleep with it!! AIBU to ask again for a referral?! Surely they will help now its effecting her sleep!?

cycle not circle

I sympathise, my dd started at about the same age and it’s been awful at times. Use the steroid to calm the red itchy bits and if it’s not working then go back to the GP and ask for a different one. Don’t be afraid to use it on the bad bits as it’s better than her scratching until she bleeds. Emollient is totally trial and error, we’ve had so many. At the moment I’m finding Aveeno Dermexa (not just the normal Aveeno, it’s £9.99 in boots) an absolute miracle worker on my dd! It’s helped so much. Have you tried probiotics at all? Worth looking into. I read that vitamin D3 deficiency can be a cause so I started giving my dd the Wellbaby vitamins as they contain D3 and it could be coincidence but her eczema improved quite a bit after a couple of weeks! Worth a try.
Definitely try different washing powders too, Waitrose do a good one that’s totally fragrance free and that definitely helped my dd’s itching. I’ve found the child’s farm cream did nothing to help her eczema but the bubble bath also did nothing to aggravate it so I use that in the bath so that she can have bubbles! I really recommend trying the Aveeno Dermexa, but get the angry itchy bits under control with steroid cream twice a day for a week. I’ve found that different doctors disagree on whether to bath regularly or not - there are different schools of thought on it. I do a bath most days and found that’s actually better for my dd than leaving it a few days. Again, it’s all trial and error.

Eczema is a real nightmare! My DD went through all the creams,steroid cream much of the time (although i didn't want to ,it was really the only way), had to cream her limbs and put in tube bandages daily. Bought numerous creams off internet, organic etc!! Sedative at night, specialist cotton sleep suits(eczema clothing)literally nothing really made much difference. She finally started to grow out of it at about 7 and a half years old (by which time I had aged about 20years through lack of sleep!!), a year later she still has it in her elbow creases and around her knees, though it is 100x better than it was, and we are both able to get a full night sleep. I think unfortunately the creams etc make a little difference, steroid cream makes quite a bit of difference though you need to limit it as advised, though time is really the only thing that works properly. I used to read posts and people would say 'such and such cream worked for me, try it' - if its bad nothing works!! Sorry, do your best and hang in there. Perhaps mention to doctor it is affecting both your quality of life for a referral. However, do not get your hopes up if you get a referral - there is no magic wand - as my experience above describes. On going nightmare till the child grows out of it in my experience. ( feel bad about the neg post, just our experience, you may have more luck)Good luck xx

You should absolutely go and ask for a referral if the gp has failed to get on top of symptoms. The NICE guidelines give guidance on when a referral is recommended and include

management has not controlled the atopic eczema satisfactorily based on a subjective assessment by the child, parent or carer (for example, the child is having 1–2 weeks of flares per month or is reacting adversely to many emollients)

the child or parent/carer may benefit from specialist advice on treatment application (for example, bandaging techniques)

the atopic eczema is giving rise to significant social or psychological problems for the child or parent/carer (for example, sleep disturbance, poor school attendance)

which it sounds like she fits into. Most likely they wi prescribe strong steroid cream and lots of emollient. In the mean time gave you tried eczema scratch mits to sleep in to stop her scratching as much as night? Make sure you take photos of the areas at their worst so that if shes having a good spell when shes seen you can show them the extent of the problem.

Hope you get somewhere soon OP and things improve.

Poor munchkin! Have you looked at her diet? It's often related to food intolerances. You could try cutting out gluten, dairy and eggs and see what happens? You'd need to give it at least 2 months trial.

Pure Potions Skin Salvation Moisturising Ointment. Worth a try. In Holland and Barrett.

I found Scratch Sleeves very good for my son at night. They have silk over the hands so they don’t damage their skin at night. Obviously different for everyone but we have had success with:
Cetirizine hydrochloride (instead of piriton) - prescribes from 18m by consultant
Eumovate
Hydromol (very thick)
Aveeno cream (use in summer)

Hope you find something that works

Definitely insist on a referral, likely to take a while on NHS so sooner the better. I had terrible, terrible advice from numerous GPs but Dermatology Clinic was wonderful. My son used Hydromol Ointment (screamed at any lotion, had to be the big vats of gunk) as an emollient but for managing the flare ups you need a really good specialist nurse and different strength creams and a sliding scale - it is not helpful to use one steroid for a week, need to keep going with lighter creams to get through the aggrevated layers of skin as they emerge. Clinifast clothing is brilliant, the alternative Skinnies did not help us. We are now almost clear thanks to Protopics. There is also a drowsey antihistamine can be prescribed for short-term use to get through the sleepless nights. Get a referral, this can be conquered. Good luck.

Hi OP,

I would try hydromol. Use it every few hours. The eczema areas must be constantly coated with hydromol. If she is already having a flare up, then a low level steroid like hydrocortisone should be used if gp agrees. Once flare up under control, smother the area with hydromol again. Use hydromol bath in the bath and do not use any softeners or scented stuff to wash clothes. Put the clothes on extra rinse to wash out any remaining non bio stuff too.

Push for the referral and once referred, push to see dermatology nurses. They are brilliant.

I would definitely ask for a referral but in the meantime consider diet, particularly dairy. Does the Piriton work? If so take it as much as possible, every 4 hours, as a preventative measure.

Two eczema babies here - one still suffers as an adult, one grew out of it. Saw dermatologist but not much different advice to GP other than an antihistamine. So don't hang on to the idea that a referral will be a fix-it. Incidentally, piriton didn't help us at all, we switched to cetirizine liquid which was a little better.

What helped us was really trial and error, finding the right emollient - or rather a range of them, as there seems to be a sort of habituation effect and they need switching around. Or different ones for different seasons, different levels of dryness etc.

We found that some creams/ointments we discovered worked well for us were also on the GP's prescription list so we could then ask for them to be prescribed.

Don't be afraid of steroids - to get on top of a crisis make sure to use enough so that it is glistening on the skin, not a teency smear (and continue for several days). Eczema skin tends to be heavily colonised by bacteria - Fucidin H is a 1% hydrocortisone with an anti-microbial and it was really effective for us.

Othe things were - sea salt baths, joining the National Eczema Society,
epaderm ointment (yukky but effective!), generally ointments rather than creams, Aqueous cream can sting badly on scratched eczema. Some of the more natural creams we tried were very good - Skin Salvation, Elena's Nature Collection.

Have you tried eczema clothing? The absolute best way to get some sleep for us and to get through itchy daytime sessions or car journeys without blood! Well worth the cost, wash brilliantly and last well.
www.eczemaclothing.com/eczema-scratch-mitten-t-eco-organic-pack-of-2

Cool your house down - heat= itch. Cold gel packs are soothing.

Eczema children are atopic so often have food sensitivities, i.e. might react with a rash around the mouth to acid fruit - but not always allergies as such. Dust/animals can be an irritant. The atopy syndrome can also come with asthma

Lots of good advice above, much of eczema management is going to be very repetitive, and not much magic comes from derm clinic really. Those times when you feel it's almost under control because you're putting on the emollients so often, keeping at that level for a long period may be the best way to go at this stage.
Have you used cotton bandaging at night? Apply your steroid ointment (if using any at the time), wait 10 mins for it to soak in a bit, then apply messy amounts of emulsifying ointment (or whatever emollient you're using) and apply cotton wrap on top. Can use 100% cotton socks you've cut the toes out of, in a size that is not too tight, but snug. It really pushes the ointment in, and can help stop the scratch/itch cycle too. I hope for the two of you that you find something that helps soon

I’ve used Anthisan cream in desperation at the itching before. It says not to use it for eczema, but I asked my GP why not, and he just said because it addresses the symptoms, not the cause. But DD was a bit older than yours. La Roche Posay worked well for us. We’re in Europe and you get a much better range of Lipikar here. The one which targets very dry and itchy skin was recommended by our paediatrician.

Bleach baths worked wonders for my kids. 1/4 C bleach in a tub of water, soak for 30 minutes every other day.

Yes, you should go back to the GP for a referral.
It took until my son was hospitalised with his eczema before we got seen by the dermatologist but he was sooo much better after just a week of their regime. We had tried EVERYTHING before that.

www.scratchsleeves.co.uk/shop/en/products/251-161-Striped-ScratchSleeves.html

Scratch sleeves were also a lifesaver

My daughter is now 5 and went through the same process,her ezcema was so bad that we had to put her in our bed and hold 1 arm each,the doctor is not a dermatologist so will give you the standard steroid cream, hydrocortisone,fuciden,Dactakort,just to get rid of you,we argued and got a dermatologist appointment and dermatologist gave us a plan, oilatum bath for 10 mins every night,then cetraben for mosturising,and steroid to put on 20 mins later.which really helped.
Unfortunately it still flares up on occasions,but we try not to put steroid on her now.just cetraben,as she's 5 know,she doesn't scratch as much,and when she's itchy,she goes and creams herself.
Last year her ezcema flared up quite bad,and we went to see the doctor, doctor had no clue and prescribed hydrocortisone,we were not happy and booked a appointment with a private dermatologist,he said it was a fungal problem and gave us Timodinne,which helped.if you can't get a appointment through the doctor,if you can,book a private appointment with a dermatologist if you can't get one through your doctor,it will cost you around £200-£250, follow-up will be around £150 but hopefully you won't need follow-up.its easy for me to say,I know you've heard this before,but it will get better and she will grow out of it.

Signed up to reply as we've had such a hard time with eczema so wanted to send support!
I would definitely try to get a referral. We were lucky and saw a paediatrician who is a specialist within a week. We also saw a dermatology nurse who was amazing.
As pp have suggested, scratchsleeves have been great. We also used wet wraps continually for weeks and weeks. (DD was three months when it started and was literally covered head to toe.)
We now have her constantly dry wrapped in clinifast clothes which means we don't need to use as much steroid cream.
Again, as others have said don't be afraid of the steroids. For context - my DD was prescribed mometasone (also called elocon and a potent steroid, much stronger than hydrocortisone and eumovate) and we were told to use it on her face twice a day to get it under control. We were also given protopic which has helped. I was really reluctant to use it but had cut everything out of my diet (am bf) and nothing else worked.

We also use antihistamines but never noticed a huge difference.

Really hope you find something that works. Do try the wet wrapping - it's hard work but worth it.

Good luck and keep going.

What is her diet like OP?

I have had eczema since birth. I'm in my 40s now. Here is a few things that help me.

Porridge in tights attached to the hot tap. This helps soften the water.

Moisturise, moisturise, moisturise... You may think you are doing enough but you need to do that alot! I use 50/50 which is an ointment. It's very greasy but works for me. I put bandages over it and let it soak in.

I avoid alot of general moisturisers because they aren't really great for eczema. Well mine anyway.

I sleep in a cool room. No heating on.

I only wear cotton clothes

I keep my nails short

I glare at anyone who tells me not to scratch. I ask them to see what it's like not to scratch. It's hell and makes you itchier.

Get an antihistamine prescribed. It may take a while to find the right one.

Sadly the sun doesn't help my skin, but chlorine does. I used to go swimming but my skin is so bad that I wouldn't dare go to the swimming pool.

Changing my diet has never helped my skin.

Steroid creams are important. Use sparingly but she will need them.

Absolutely keep pushing for a referral. My 9 month old DS suffers terribly with it and we were referred when he was 4 months old. The GP did initially give us steroids and moisturisers but none of them worked and I found her very unhelpful. She didn't refer us until DS's skin started to crack and bleed! He's cows milk intolerant and has other allergies which don't help the eczema. Has your DD any allergies or intolerances?

Most people seem to swear by hydromol but we never found it any good. We use cetraben ointment 4 times a day and it's good for keeping his skin feeling soft. We use hydromol bath emollient every night in the bath along with dermol 500. Always pat dry after a bath and try to get any creams on within 3 minutes. It's been a long haul trying to find steroid creams that help with flare ups. At the moment we use eumovate for five days on his face to get rid of the flare, then use protopic (which isn't a steroid) every other night to keep it at bay. We have used daktacort too but its milder than the eumovate. We use elocon on his body (have used it on his face for a few days here and there on recommendation from the dermatologist as his flare was so bad, it's a very strong steroid). We also use ichthammol zinc oxide which is like a clay that we put on top of the steroid and then either wet wraps on top or skinnies vest and clava.

It is absolutely trial and error finding the things that work for you and its exhausting! But keep pushing, your poor DD needs expert help. I really hope you get something that works.

@NabooThatsWho she doesn't really have dairy products, very rare but I know they give her milk at nursery, she only goes 2 days so I'm guessing if that was going to effect the eczema id see a flare up after those 2 days? The flare ups seem to happen when The eczema is 95% gone then next morning its back 100x worse! xx

(Sorry for the scribbles)

What does everyone do on their face or DC's ? She gets it on her eye lids so cant use steroids there 😔

Poor thing. Looks similar to my daughter who suffered at a similar age but has now grown out if it mostly except when stressed or run down. Have you tried diprobase ointment than cream? Much more greasy but did ease it more than diprobase & cetraben cream etc....

HJWT I have pmd youxx

Ive pmd you :) xx