Baby eczema, sleep torture, help!

[salvadory]

My 5 month old EBF DD was diagnosed with paediatric eczema at 10 weeks and it has been an uphill struggle to get it controlled since then. We are using dermol cream and a 1% hydrocortisone cream daily (if I stop the steroid she flares the day after). Previously been using cetraban as an emollient but the paed community nurse prescribed dermol after I complained that my daughters itching was driving us all mad. She wears tubifast gloves at all time as given free reign of her hands she would tear her skin to shreds.
I'd appreciate any advice as to help her (and us) get a better nights sleep, last night was 'good' in that she only woke 5 times between 11pm-6am (I usually BF back to sleep).
I have a 2 year old DD also so sleeping when the baby naps isn't an option.
We have a referral to the dermatologist (don't know how long that will take) and have tried Piriton (1ml) to no effect.
My husband introduced a Bottle of formula at night about 3 weeks ago and it used to make her sleep from 7:30 tomidnight but not any more. Since she turned 5 months we have started weaning, just baby rice or puréed carrot, again no change seen.
Help!

I don't have any advice sorry but bumping for you. My ds has mild eczema and was told to apply the hydrocortisone cream for a few days after its cleared up otherwise it does flare straight up again.

My symphaties to you. Does she have any other symptoms (eg. reflux, tummy upsets) other than eczema?

I am only asking because my DD had severe eczema when she was younger. Nothing could keep it under control, including very strong steroid creams and long term prophylactic antibiotics (she was under consultant care and they were at lost of how to treat her).

In the end, I found out that she was allergic to cow's milk protein and soya. Apparently it is very common in babies. She was exclusively breastfed at that time and within weeks of me stopping dairy and soya, her eczema cleared up. It was like a miracle. Perhaps this is something you could consider too, especially if she also suffers from other symptoms. Bear in mind though that it could take at least a couple of weeks (in DD's case, 6 weeks!) before you see the effects, so don't give up on first attempt.

The other thing I could suggest is seeing her doctor again and asking for a different antihistamine. Maybe Piriton does not make her sleepy enough. Secondly, if hydrocortisone is not clearing it up, perhaps she needs a stronger steroid cream. It is better to use a stronger steroid cream for just a few days, than to use a milder one long term.

Also, if you are taking her to see the doctor, you could ask if they would allow you to try different types of emollients (best if they have small packs of samples), so that you could work out which ones are best for her.

Lastly, I am sure you already know this, but make sure you apply her moisturiser (dermol) as often as you can throughout the day (& night, if necessary). I always keep a tub of moisturiser by my pillow. So each time I breastfeed, I moisturise DD as well.

It is horrible to see your little one suffer with eczema. Hope you find a solution soon.

just wanted to sympathise and wish you luck - nothing much to add to the good advice you've already been given on this thread - just a thought - is she getting too hot at night? I have read that children with eczema sometimes struggle to regulate their body temperatures - my DS had it from 9 weeks and it was difficult to manage at various points, but I'm often amazed how he manages at night with the thinnest duvets or none at all, which maybe means the heat thing is true in his case. Diet doesn't seem to affect him - each child is so different I guess.

How often do you Dermol? When dd is bad we will slather her every at least every couple of hours. Knew someone who had to wet bandage their child to get any sleep but I wouldn't know how. Poor you. Assume you have eliminated stuff like perfumed washing stuff and bath stuff. You can get a Dermol to add to the bath.
Eczema is bloody awful.

I could have written this myself when my 13 month old was the same age.

First off, do not wait weeks or months for your referral. Call them, explain the severity like you have here and ask for an'urgent referral' you'll get one in 2-3 weeks. We had to do this.

Second, you need stronger steroids. Dont be scared of steroid creams they'll never prescribe you enough for it to damage/thin your babys skin. Gp's are cautious - lack of knowledge - the dermatologist will be more helpful.

Thirdly, consider that dermol is not for her. We went through 4/5 creams before we found one that worked. Both my children have allergies to certain creams making their eczema much worse.
Dermols a pretty harsh cream too, try Aveeno.

Stop using all fabric condtioner, was he clothes and extra rinse too. We use soap nuts, as natural as possible.

Hoover regularly and wash her bedfong regularly in case it is environmental.

Cut dairy out your diet for a week, see if that helps. Then wheat (instead) to see if that helps.

Be careful of perfumes you wear as well.

And use steroid ointment rather than cream.

Only bath once a week and pat dry.

Thanks everyone, we've been back to the gp and swabs taken last week were positive for staph aureus on her skin (in higher amounts than there would be on normal skin) so she starts flucloxacillin tomorrow.
I'm collecting a eumovate prescription tomorrow too so fingers crossed it works.
Re the creams, washing, hoovering etc I am doing it all, the only thing I haven't tried yet is removing dairy (although I have cut down) as two gps said not to bother (I know, but it was right at the start when I had faith in them).
Thanks for the advice re the urgent referral I asked to go private today as I was so desperate and the gp never once mentioned an urgent referral. The private dermatologist is at a dermatology conference until next week so I may well ask again for an nhs referral as the cost of the private appt was eye watering.
can I ask Crusty Bird how your little one is doing now?
I know there's no magic cure but the thought of such interrupted sleep for my family for the next 5 years is soul destroying.

Hi, This is bringing back memories - I had to bf my son to sleep every single night and sometimes he would wake up what seemed like every half hour - exhausting. He's 12 now and just has a little eczema in the inside of his arms. When he was about 4, we got a call from the HV who said that she'd been at a conference and had been warned that some children could over-heat and she had immediately thought of my ds. We stopped covering him in grease every night and his eczema almost cleared up within a week. He must have grown out of it. I don't think this would have worked when he was a baby but it's worth bearing in mind.

I am totally with you! My son was diagnosed with it at 10 weeks although had it since being 3 weeks old. Drooling makes it worse as does teething.

At this moment in time, he is on his 2nd lot of clothes because he is soaked and scratches so much he makes himself bleed. We have tried; oilatum, diprobase, E45 itch relief cream, sudacrem, dermol and he is on 2 different types of steroids one with an antibiotic in it.

He cries when his creams go on and it makes him itch like mad. GP gave him antihistamine but he has 2.5ml up to twice daily. I had been using it intermittently but now beginning to wonder if I should give it twice daily regardless.

What are these gloves? Can they be bought?

Have you heard of scratch sleeves? (Google them) they might help your little ones to a least not break their skin by scratching so much. Other sites that do eczema clothes have ones with little mittens attached to sleeves to help scratching. My DD (4) wears sleep suits from cotton comforts and Ihave found them to be really good, but I know other sites are available.
Your GP should be able to prescibe little mittens that are made from a tubigrip type of material and they have been good for my DD (but I didn't try them when she was as young as yours). Comfifast, tubifast are a couple of the companies who do garments on prescription.

Also a good tip that it took me a while to learn was use emollient/moisturiser numerous times a day. We use the really clarty Epaderm/Dermol and although it is really heavy duty it does keep the skin soft. We have tried aveeno, diprobase, epaderm cream, dermol but come back to Epaderm every time. You really do need to do it frequently. At one point we got through a 500g pot each week.

Diet, and laundry powders won't help you. Perhaps laundry powders will if you have changed recently and seen a flair up.
Bath as little as often and putting something like a bath emollient in the water might help and although my son is 3.5 we use emollin which is a spray its an emollient its non greasy and goes on real easy. We lie my son on a towel and spray him to keep his skin hydrated.
If eumovate doesn't work, you could see if its infected in which case you'll get fucibet. After its cleared up ask for hydrocortisone ointment as its absorbed better than cream.
All the best I know what a nightmare it can be. My son was diagnosed with a rare skin disorder at 18 months we waited for a referral to specialists for over a year, he is now with an excellent dermatologist. Push to hurry the appointment through as once we were under the care of the dermatologist the pressure and the feeling of hopelessness disappeared. Once again all the best.

Hi willsmum, I've got tubifast gloves on prescription which are much better than the mitts and babygros with built in mitts I had been using. My DD wears them 24/7 as if I remove she scratches until she bleeds :(
I have to tape them on her wrists as she can get out of them otherwise. Your gp/ paed community nurse should be able to prescribe a whole host of tubifast vests leggings etc but the gloves have been most useful.
Thanks for all the advice re emollients. I am using tonnes of it, have. Have been through oilatum, doublebase, cetraben, epaderm (too fatty for my DD and seemed to aggrevate her)and now dermol but the only thing that really helps is steroid (we're using hydrocortisone ointment).
She's been on steroid for at least 6 weeks now which does concern me as her skin is so young and I have lost all faith in my GP's capabilities.
I'm going to push for a dermatologist appt but have already been referred by the community nurse who is unable to tell me how long I'll have to wait.

Thanks also Iwanders. We are doing all youve suggested (and had fucibet already) but the hope of the dermatology appointment remains.

I went to see a specialist eczema nurse recently and they said new research shows that babies with eczema need a 15 minute minimum bath every day!

Custardpies thanks for that! I just found out 8 month old is allergic to egg, soy, and dairy and I have cut them from my diet for the past 10 days but he is still having flare ups so wasn't sure how long they take to leave the system!
GP is completely useless and said a couple of days (which I know is wrong).

He's ok now in that we are in control of it, rather than the other way around.

We used Emuovate too.

I have to be honest, we had to use the strong steroids for a long time but very very slowly he needed them less frequently. Dont fear this, the dermatologist or GP will not over prescribe you. Once speaking to a doctor who was a paediatric dermatologist in Great Ormand Street, who told me you have to use a very strong steroid cream every single day for years and years before the skin thins.

We'd have to use it once a day to start with, then a month later 2-3 times a week then 2-3 months later 1-2 times a week. Hes 13 months now and we use it about once every 10 days. I use oilatum on him twice a day.

Some people have good results in slathering on Oilatum (or whatever cream it is) 10 times a day. I found after months of doing so, that putting it on 10 times a day or twice a day made no odds. Not using it at all was bad though. So I stick to twice daily.

Aveeno can be amazing stuff although my boy has developed an allergy to that now, his skin is a state after using it.

I also found wet wraps absolutely brilliant, I very much reccomend them. In fact Ive not had them long. I feel out weaning off streroid cream would have been far speedier had they just given them to me when I first asked for them.

Best of luck.

My son does not respond to steroid creams, Aveeno/Dermaveen (anything containing sorbolene) so I was forced to research other alternatives. I have always been a greenie at heart and prefer natural products over generic supermarket brands but with my little tyke's out of control eczema I went straight down the cortisone route. After months of agony and sleepless nights I found an Australian company that my aussie girlfriend had been using to get her adult eczema under control. I jumped on their website and after reading their testimonials, I thought why not give it a try. I have found their products to work absolute wonders. Three months after my first online purchase and my son is eczema free. I first bought their Eczema and Psorasis balm (a natural alternative to steroid creams) and have now thrown out basically everything else in my house and now use all their products. It seems to be keeping the eczema at bay and is reasonably priced. www.moogooskincare.co.uk

I too struggled to control my ds eczema. I went to see a doctor who specialises in alternative medicine because I was getting no where with my gp and was waiting on my referral to hospital. He told me to remove cows milk from ds diet. In the first week his eczema got better but it did not clear up. Because it had improved I decided to stick to a dairy free diet, with some goats milk. Four months later his skin was perfect. My dermatologist told me to reintroduce cows milk telling me ds would now be ok with it now. Ds was ok at first but then his eczema came back just as bad as before. Once again it took around 4 months in total to get rid of all the eczema after removing cows milk. I still use diprobase cream as washing powder and heat can give him small patches of eczema. With cows milk he was covered in it, scratching every night.

poor you it is really tough. DS suffered dreadfully from 3-6 months with severe eczema all over his body and then has slowly improved. This has been largely due to getting all his allergies diagnosed! At 5.5 months I asked the gp about cutting out dairy from my diet as someone had suggested it to me, he just chuckled patronisingly, a couple of weeks later ds had a massive reaction to his first taste of dairy (in a baby porridge), his whole face and mouth swelled up within seconds and the ambulance ride was so scary. It turned out though that he was also allergic to soya, wheat and various other foodstuffs so you do really need the testing to get to the bottom of it.

on top of getting his allergies diagnosed, other things that helped: stronger steroids, scratch sleeves, using cetraben really regularly (4x a day minimum) (we tried epaderm first but he got repeat infections), dermalo in the bath and dermol as a soap.

As soon as his eczema started to improve his sleep improved dramatically. He went from not sleeping for longer than 40 minutes (day or night...) at 5 months to sleeping through most nights by 10 months. I pretty much want to hug his specialist every time I see him as his support and advice turned my life (and marriage) around really. I was pretty much deranged from lack of sleep by the time DS had his reaction.

If I knew then how much difference specialist support would make I think I would have paid every last penny I had to see a specialist asap, or at least kicked up a stink at the gp's until they referred me sooner instead of continually fobbing us off with antibiotics piriton and hydrocortisone!

that said, we have just been to a rural bit of Ireland and ds's eczema pratically disappeared for the whole time we were there, which has got us thinking...

oh just read your comment about needing to tape the mitts to her wrists. definitely look into scratchsleeves they have worked brilliantly for ds as they are so easy to take on and off. we tend to stick them under his pyjamas at night so he definitely cant remove them, but in the day if he got scratchy I could just pop them on over his clothes and he couldn't easily remove them, but he could still play quite happily in them. Now he's older he still quite happily lets me put them on him whenever I think he needs them / at night.

They also have special ones for in the bath which would have been a godsend if I had found them when ds was younger and very scratchy.

Thanks cybermummy and tired feet for the scratch sleeves recommendation as I hadn't heard of them before, it beats taping gloves on every day.
Despite a week of eumovate there has been no improvement in her sleep, last night was every half hour from 10-4:30.
I went to the GP this morning to ask for an urgent referral to the children's hospital and he refused saying they'd just put me under the care of the paed derm community nurse team (who I see already).
When I said I didn't care I just wanted her skin to be assessed by a dermatologist he again said that wouldn't happen.
I know there's no magic cure for eczema but I'm stuck between the nurses (who are well meaning but don't know what to do now)or a GP who still thinks its ok to prescribe aqueous cream for a 5 month old.
We've now got betnovate (sp) from said gp and I have to go back in a week.
Any more advice would be appreciated.
FWIW I was really firm this morning about pushing for a referral quoting NICE guidelines re sleep disturbance to no effect.

Bump

Ds was the same. It's miserable. Wet bandaging, scratch sleeves, steroids etc. awful.

But I did find a magic cure. Buy vitamin e tablets (see through with gel inside), snip open and squeeze the vitamin straight onto the skin. It works. It works quickly. Dermatologists I went to all dismissed this, but we're surprised at the results.

Stop all the steroids, it's skin thinning.
Try it and see. Might work for you too.

Good luck!

Salvadory

I feel so angry on your behalf - you have been patient but firm with gp but they are being useless. Your son needs to see a specialist.

I hope you dont mind me weighing in with my advice, but maybe you should be looking to change doctor? i always feel our nhs can be great but it is a bit of pot luck sometimes. Or is there any way at all you can scrape together funds for a private appointment?

My son is on eumovate and it did make a difference but very quickly. we were told to use quite a bit more than we thought and use twice a day at first, gradually reducing. after one week of no effect it sounds like your son needs something else maybe. i am really worried my ds will get worse again after his treatment on eumovate is over though (another 4 weeks to go) so watching your thread avidly. i dont think the battle is over for me yet either.

i really feel for you as the constant scratching is so distressing to watch. i dont use scratch mitts - i would suggest nail filing at bed time - strangely it calms my son down too. boots do nice packs of baby nail files.

when my son is waking at night due to eczema we co sleep. it seems to settle him more.

we use hyrdomol and dermol too - they are good although i think it is the steroid making the main difference. i agree with the poster who says you can go over the top fretting with emollients - i used to apply aveeno every hour i was so desperate and i think maybe his skin just adapted to it and it stopped working. we apply hydromol now at every nappy change.

please keep posting and i will too if i discover any new things that work. sending hugs of support as i find ds eczema really upsetting and during a bad flare up i really cant think of anything else.

Scratchsleeves broke the cycle for my DS - they really are wonderful.

I sympathise so much, eczema is just so cruel for them. I thought DS was going to suffer forever but actually he largely grew out of it at around 1. He still has patches but nothing like it was.

Another vote for scratch sleeves - we bought 3 pairs- one to wear, one in wash and one drying- we were that reliant on them....
DS is now three and touch wood we have minor flare up than the all over horror of his first year or so.
The washing of clothes and bedding at a high temp -60degrees- with an extra rinse was a crucial turnaround point, as was realising he had a skin infection (I think the same as your child op) getting the medicine to treat that along with specialist telling us to wash DS with dermal 500 which has anti bacterial properties. We still use that for washing, aveeno for twice daily creaming up and soft white paraffin (a base ingredient in many emollients) for extra umph on any problem patches that appear- eg if he gets eczema where his clothes rub on occasion, soft white paraffin is used.
I really feel for you, it is hugely upsetting worrying and time consuming, before we get on to the distress of seeing your little one suffering.
One tip when you go to specialist ask if there is a specialist eczema nurse who provides ongoing support and monitoring. In our case anyway, her whizzo knowledge and ideas helped break cycle. Good luck xx

Ps never ever use aquaous cream as an emollient, it should only be ever used as a washing aid instead of soap.
It so angers me that concerned mums are given advice to use it first.usually by half witted health visitors..
In our case, I am quite sure it did make DS s early onset on eczema a lot worse.