eczema baby waking every 2 hours

[hostelgirl74]

This will be a long one but he is out with his dad today so can get it all out....

My baby is now 18 weeks. He had his first eczema outbreak at 5 weeks. It is all over his cheeks, a bit on his arms and all over his legs. He developed it (at first) when he was solely breastfed so unless it is something i eat (and believe me i try and think of everything....) it must be somehing environmental triggering it. He used to be able to sleep a 7/8 hour stretch followed by 3 or 4 hours (put him down at 7 and wake twice or 3 times a night). Now he wakes every 2 hours. This seems to conincide with his dexterity improving. As he can now co-ordinate his movements, he is forever rubbing his legs together for friction or trying to poke his feet through the gaps where the poppers are to "get free" and do more damage.

I put epaderm on him about 8 times a day (every change and before bed) and have tried a 0.5 steroid cream (although they said not for his face),cetraben oil and emoilient, emulsifier, oiltatum, dermol 500..... It is so disruptive to me and him and currently after the first "wake up" he comes in bed with me. Even my feeding him to try and comfort him back to sleep doesnt always do it - i have to try and do this whilst laying my other arm and hand at various angles to immobilise his hands and feet! I have bought some scratchsleeves which limit the damage he can do, file his nails (same) but still as his dexterity improves, his sleep is getting worse. I can not see how i can possibly return to work as scheduled in August at the moment. Nor can i see a time he will be in his own room, seems impossible. It is such as shame as in the beginning he was doing such long stretches.

After the first lot of immunisations, it didnt seem to have much of an effect but the last lot (the 12 week ones - we were late getting them done) it flared up worse than ever. I wonder if the men c component that wasnt in the first lot was to blame? Am dreading the next lot (scheduled in 4 weeks) as there are 5 at once then not 4 in the "cocktail"!

I am combintation feeding as don't want to wean him til he is on more of an even keel with it so i can see what worsens him. I avoid alcohol, chillis, tomatoes, oranges myself which makes for a dull existance as a vegetarian..... We use only a small scoop of non bio powder and bath him about 3 times a week with cetraben in it. We hoover often, floor is wooden......

My other half and me who were relatively happy before we had him (were together 12 years - first child) are forever snapping at each other through lack of sleep and god knows if we will ever have sex again (not since he was born). Infact it has put him off so much he has just had a vasectomy (his choice). Every night i have to go to bed an hour after baby as otherwise i get no sleep at all (his first stretch is always the longest) so we rarely have time to have a good chat as life is like a military operation doing the chores in this brief period. I have to schedule watching Eastenders/Corrie (the only thing i watch on tv) with his feeds on iplayer!

The doctors practice is awfull - have to battle with an 0844 number to make an appt that is constantly busy/costly then have another battle with a receptionist who can always only prebook an appointment at 8.30am cause "they are the only ones that are prebookable" which after no sleep is awfull to then try and attend without a car. They then offer a "callback" - well no - i want someone to SEE MY SON AND MONITOR HIM.......
Is anyone else going through/been through something similar? Aaaarrrrrrhhhhh!!!!!!!

First of all some huge (((hugs))). That sounds really really tough, and it must be awful to see your baby so uncomfortable.

Can I ask - does your son have reflux at all?

My son didn't wake every 2hrs like that, but he did have eczema that started at around 5 weeks old, & covered his chest from his neck to his nappy, his arms, his thighs & he also developed a bad case of cradle cap on his forehead and also on his scalp. He also developed reflux, which got worse at around the 4 month mark, then worse still once I started to wean him & he also developed rashes on his face & there were new ones breaking out every day. And he had explosive nappies. I had been to the doctors who had prescribed hydrocortisone cremas & emollients etc for his sking & gaviscon for his reflux & said they didn't usually do any more than that b/c he would grow out of it. He was very irritable most of the time & would cry & cry, & it was a very stressful time for us all. Everyone just told me I had a crying baby & I just had to live with it. I suddenly realised (at 7 months old) that these rashes seemed to be worse after eating dairy & then I started researching & found that eczema is closely linked with dairy allergies/intolerances. And that babies who are milk protein intolerant are often likely to suffer reflux, and have heavy cradle cap, and facial rashes. I went armed to the doctor, told him I couldn't cope with things as they were, got some AD's & he reluctantly agreed to prescribe a dairy free/hypo-allergenic formula for DS. We started him on the new formula (had to wean him gradually onto it), completely cut out all dairy from his solids diet & within 2-4 weeks the rashes were gone, the eczema had cleared, the cradle cap cleared up, he was sleeping better & he was like a completely different child.

Looking back, I see the problems all began when I stopped bfing at around 3 weeks old & switched to formula. Within 2 weeks of that, he was gassy, constantly feeding & back arching & crying (reflux symptoms) & the rashes etc all started.

I'm not saying dairy is your issue here, but IIWM I would certainly consider trying an elimination diet. Since you are combination feeding this would necessitate your GP prescribing a hypoallergenic formula eg Aptamil Pepti (we use this one) or Nutramigen or Enfamil AR, and would also mean you would need to exclude dairy from your diet too (since it can be passed through your milk in trace amounts). It can take a couple of weeks for all traces of it to leave your body so you would perhaps need to give the trial a good 4 weeks to see if you get any improvement. I tell you I cannot believe the difference it has made to us.

WRT you & your OH, things are tough now, but as your DD gets older things WILL get easier. When you are in the pit of sleep deprivation & things are hard it can seem like they will be that way forever, but they won't. She will get older, learn how to STTN, the unsettled nights will stop. So tell yourself this, tell your DH this, and perhaps arrange a babysitter so you can have a bit of couple time together.

hth.xx

He does have reflux as well yes - some days/nights worse than others. As a vegetarian, it would be hard but maybe it would work. Can you buy the Aptamil one you said as the doctors are not very helpful. As it started before he was combination fed, when he was just breast fed, it must have been the trace elements coming through in my diet although i suppose being a veggie, i do eat alot of dairy.

I would suspect dairy as it's the most common trigger.
Can you switch to oat based calcium enriched milk and bump up pulses for calcium and protein? Try for a week or so.

Also he's at an age where he'd be waking a lot anyway! So worth going dairy free and either dropping formula for a bit while you go no dairy. Jut a week trial will tell you if that's it then you can decide about switching to hydrolysed formula. Pointless doing that if you still have dairy.

I feel for you, DS had terrible facial eczema from about 11 weeks until it started to clear at around 30 weeks. I used to sleep with him under the crook of my arm to stop him from scratching in his sleep

Get a GP appt and insist on a paediatric dermotologist referral. Mine were excellent, with great advice and we would have gone down the food allergy testing route v quickly with them if it hadn't continued to improve (it had started to get better just before the hospital appointment).

Keep the skin moisturised as much as possible, you probably already know but if the skin is allowed to dry out it makes things much worse.

DS at 17mo is pretty much eczema free now - I always use Oilatum Bath in his bathwater, I don't use any soap etc on him, and moisturise him with Doublebase emollient after his bath.

Good luck.

No the Aptamil one is available as prescription only. TBH that's the only way you'll get the dairy free ones. You could get an alternative from the supermarket eg Oatly oat milk, or Alpro do a range of dairy free, Tesco have also just improved their range & have almond, rice & coconut milk, all suitable substitutes. However, the main benefit of getting the prescription formulas is that they are fortified with all the vitamins & minerals that a baby needs, & the supermarket dairy free alternatives won't be fortified to the same level.

How much are you still BFing him? Would it be possible to just BF rather than combination feed, & you eliminate the dairy from your diet, just for a few weeks to see? Then if it does help, you can go armed with your evidence to your GP to get your prescription? Or perhaps just try asking if he would be willing to prescribe the formula on a trial basis to start? (((hugs))) I know how hard it is, I had to fight for our prescription too - GP's just don't want to spend the money on it (its quite expensive) & in my view its a shame they are willing to just let babies suffer b/c they can't stand up for themselves & tell them if they are feeling unwell/uncomfortable. As parents we are their advocates so we have to make a stand!

One other thing to be aware of is if your doctors suggests soya milk, I would completely avoid that - the proteins in soya can behave in a similar way to those in cows milk so many LO's who have cows milk intolerance will also react to soya. Plus there is some 'controversial' evidence about too much of it being bad for baby boys as it mimicks oestrogen in the body.

HTH.xx

Friend of mine has started using Emu Oil on her dc, it's cleared it after 4 uses. Not sure at what age that can be used though

Problem with sole breastfeeding is you need to express milk to produce more. I used to be able to express a bit in the evening after he went to bed but cause he wakes so frequently now i am always scared there will be none left for him "in the tank" when he wakes up if i express it.
Surely if it was a dairy thing, it would have kicked in from day one rather than waiting 5 weeks to rear up? Its not like i suddenly started eating more dairy. Also, at 6 weeks when i then introduced formula feeds, would it not at that point got significantly worse as obviously this is dairy direct into his body rather than via me?
I did ask for referral to a dermatologist but was advised they have to try different things/do all they can before they go down that road. Tried an oat bath with him tonight. Obviously i dont know how he will sleep yet (just gone down) but he just scratches the entire time he is in the bath. I really want him to relax and enjoy bathtime and try to play with toys with him but he just scratches.

Yea I appreciate that. I suppose I was only asking b/c I don't know how much you BF versus FF - if you were doing just 1x FF per day that would be easier to cover I suppose. If its mostly FF with the odd BF then that would be more difficult. WRT why it wouldn't happen from the word go with dairy - I think its a build up thing & takes time for the symptoms to start appearing. My DS didn't have any apparent problems with dairy when he was newborn & I was bfing, TBH I had no idea the dairy was our problem til he was 7 months old. It was dismissed simply as eczema by the dr & everyone told me he was just a crying baby & they'd never heard of reflux & dairy allergies in their day. The pharmacist told me he just 'had wind' & that I should wind him better (he was 7 months old & I think I had mastered it by that point). There is an awful lot of ignorance about it. And TBH if I hadn't questioned it & tried eliminating it from his diet, I'd never have known it was dairy causing our problems.

My DS's skin issues also flared at around the 5-6 week mark, & the only thing I can now attribute it to is starting formula around 2 weeks prior to that. I do find even now (at 19 months) if he eats dairy it can take several days for symptoms to show & they build up, so over time, the more he eats the worse the symptoms get, and likewise it can take a couple of weeks for the symptoms to subside when we withdraw it again.

I'm not saying this IS your problem, but you are looking for answers & I'm saying its something that could be related. If all other avenues are exhausted, it is surely worth a try?

How awful. Am replying on phone so will be brief. Ask for urgent referral to dermatologist. Only way to ID allergies. Piriton prescription meantime. HC fine on face in small amounts. Dd allergic to milk and egg and so much better now getting proper treatment.

You can actually buy aptamil pepti over the counter - it's not only on prescription. Main barrier likely o be cost - boots wanted £36 for a normal-sized carton the last time I asked.

Milk intolerances don't necessarily present immediately after ingestion. Like omama says, the symptoms can be delayed.

It's quite common for babies allergc to milk to also be allergic to soy protein. Also, you need to avoid all mammalian milks - e.g., goats' and sheep's too.

Hope you find a solution - it must be awful for you and your little babe.

Yea I think it's a build up of dairy too. Both of my DCs reacted to a variety of foods via my BM and it took a few weeks to notice - because it was an intolerance not a full blown allergic reaction.

It's worth doing the elimination just for a week then you can rule it out. You can express in the morning if you want too - you don't run out of BM though.

i do eat a lot of dairy so it could be related - also i reach for chocolate when stressed and very stressed so maybe. I think i will cut down and see if it looks like it is working cause as a veggie, eliminating it is very difficult - especially at the moment as i do not have the time to prepare some foods ie lentil based protein etc.

I can imagine its hard! You could try veggie lentil soups with bread (dairy free spread), veggie/quorn sausages that sort of thing for a week?

I know it's really, really hard but honestly, it would be worth cutting it out completely for a good two-week period: if it works, the results will be very worthwhile. If it doesn't it's only a couple of weeks. Could you maybe run to ready meals for a bit (there are a few dairy free ones around- especially chinese and thai)?

If your baby's sensitive to milk protein you will, sadly, probably need to completely eliminate it from your diet - cutting down probably won't be enough.

Obviously if you are supplementing with any non-hydrolysed formula at all, then it's not going to be worth your while cutting dairy from your diet tho...

Aptamil Pepti as far as I am aware is not available over the counter. I checked in my local Boots pharmacy & they said no, & I actually rang Aptamil to check this b/c I was told you could buy it over the counter & they said no absolutely not, its prescription only. This is Pepti 1 which is for the dietary management of cows milk allergies/intolerance. This was over a year ago so maybe this has changed. Not sure about Pepti 2 either.

hostelgirl - check out your local supermarkets - they have great ranges of dairy free products you can use so you keep as closely to your usual diet as possible. Milk - oat milk, coconut milk, almond milk are all good substitutes & can be used in cooking, hot drinks etc. I found coconut milk to be a closer likeness to cows milk in terms of colour, consistency & taste.
Margarine - you can get dairy free olive & sunflower margarines that look & taste just the same as regular marg
Cheese - I've yet to find a good cheese substitute - you can get soya based ones (which you will want to avoid as discussed above) but tbh I've found these very stinky & don't taste all that great (although DS doesn't seem to mind them!)

HTH.x

Our boots (and several other chemists) have sold pepti - both one and two - to me when the doctors' surgery has ballsed up the script. I can't see why it would be prescription-only - it's not a drug, it's a formula milk. I have also managed to obtain a tin of neocate without prescription.

Chemists don't generally stock it though - it is usually a product that has to be ordered in specially.

Just a quick note, I sympathise. Our 3.5yo still wakes with it.

It won't stop the itching but we minimise the damage by using scratchsleeves at night. They are amazing and we wouldn't be without them.

Made by parents of eczema children. Google scratch sleeves I'm afraid I can't link right now.

I'm seeing my doctor about the same thing today. As soon as he went onto formula at 6 months he's had awful eczema. Poor thing wakes him up scratching. Apparently I was the same when and couldn't have dairy either. It's worth a try

So sorry to hear your sleep is so bad, i can partly empathise, although thngs do seem to be getting better for us.
I believe that ds flared up after third set of injections, so wonder if related to that too?
I have ebf, and his eczema may wll be linked ti my diet, but strange that it inly flared up afte 4 months? Apparently eczema is hereditry, so my dry skin could be why he has it?

We saw lovely eczema nurse, she is west sussex pct based, who recommended epaderm, we use cream and ointment, the cream to slather on lbeally and regularlly, the ointment on his face and hands and other places that ut need to 'stick' to. We also use hydrocortisone 1% on flaree up red bits once a day after a bath, i have some 0.5% too, which i apparently can use on his face, but have onky done so on very rare occassion when things were very bad. She also suggested we get some 2% for bad flare up days. W also use dermol 500 and demol 600, one is a bath additive and the other can be used as a soap substitute, and bath him daily, which i was told is the latest recommendation to help stop the eczema becoming infected.

I am sorry doctor isnt very accessible, i imagine fir them it seems a bit routine, but for us as mums it seems terrible. Not sure if yiu have one locally, i mentioned we saw a childrns community nurse, who specialises in eczema, t my health visitor was able to refer us, which skipped the need to see a doctor again. Then they just write to dictor telling them ehat they think and what to prescribe!

Apologies for spelling, message posted before i had a chance to check it. Do hope you manage to get a referral, at its worse, inwas booking appointment every fortnight, then cancelling if i didnt need it, but sadly we did.

OP, how are things? What did you decide about the elimiation diet? I wanted to add my voice to previous posters to say even though to begin with at can seem too much of an effort, it really is worth trying to eliminate all dairy and soya for a couple/three weeks. My ds2 is now 6mo and has had eczema all over his poor little body since about 14 weeks. I was dismissed twice by the GP as it just bein simple baby eczema but I was convinced it was something else, so I did eliminate all dairy, eggs and soya for three weeks. The eczema totally cleared up, so I reintroduced and after about a week of eating dairy again the eczema flared up again, even worse than before! So I am back dairy free for the remainder of bf, and will go very easy on the dairy when he starts solids properly.

I still haven't managed to get a referral to a dermatologist though. They still tell me it's not serious enough. I guess if I can control it with the dairy free i don't need a dermatologist. We'll see.

Even as a veggie you can manage dairy free - think vegan and you can't go wrong! I really missed chocolate too so I started making my own - if you decide to go for the elimination I can post the recipe. I would avoid chinese ready meals as they all have soy in them. But many normal ready meals are dairy free - you just need to check labels, all the allergy advice boxes should mention milk if it's in the ingredients.

I really really sympathise, especially about the sleeping. When ds has a flare up, we are up every 1.5-2 hours too, it's ever so hard. We still swaddle ds, partly because he's a swaddle addict, but also because it's the only way to keep him from scratching. I know baths are awful too, in fact pretty much he has his clothes off, as he just can't help scratching all over. We have to distract him pretty much all the time during a flare up to stop him from scratching and making it worse. So I know how hard it is! I would really try the elimination thing, worked a treat for us and ds is like a different baby!