Struggling: poss dairy allergy, breastfeeding, eczema and low supply (long sorry!)

[BordersMummy]

Hi all, was going to post in allergies but think I'll get more help here...

I have a 20 week old who was born at 6lb 11 (25th %ile) and had a great first couple of months with breastfeeding going really well. Was planning to EBM to 6 months and then start mix feeding as I began to wean DS.

At 6 weeks I took him to GPs with first tiny patch of eczema and have had a bit of a slog since then with various creams, a worsening skin problem, very very very itchy baby, infections and antibiotics and eventual referral to a dermatologist who has been sympathetic and got us blood tests to check for allergies (no results yet) but not really able to 'fix' anything (which I wasn't really expecting either).... She suspects dairy allergy so I have now cut out dairy, egg and nuts from my diet.

In the meantime, at 10 weeks, DSs feeding became ridiculously fast - no more than 10 minutes at a time (at approx 6.45am, 10.30, 2.30, 6ish, 10.30, 4). If I tried to feed him more he'd get v agitated an upset. When asked, HV said don't worry about it - totally normal and all fine so long as he's gaining weight ok. He's also always been quite a sicky baby, again HV said don't worry, so long as he's gaining weight ok.

I've always said I wouldn't worry about weight gain (I'm not a fan of growth charts at all) but had him weighed at 12 weeks when he had jabs - as he was feeding so quickly I wanted to check he just feeding v efficiently. I wass told he was gaining weight fine and that he was 12lb 5, which seemed about right.

Fast forward to 18 weeks.... eczema horrific, very sicky, go to see dermatologist who weighs DS and goes through charts in red book. It turns out that at 12 weeks the HV totally cocked up and converted his weight wrong. At that point he was actually 11lbs something, and had slipped to 9th centile, and since then had dropped further to 4th centile where he is now. I feel like a total eejit for not checking numbers sooner (but then why should I have?). So I am now being told that he is Failing To Thrive (which is such a dreadful term!! He is in reality totally very happy, hitting all milestones and seemingly healthy apart from the eczema and some rather impressive poos).

Up until about a week ago I have always been able to express about 5-7 oz/day without too much of an issue, which DH gives as a bottle for the late feed. Then about a week or so I suddenly started getting much less milk out - tonight I've been going more than 2 hours and have only 3.5oz!

So..... here are my questions (and thanks for reading this far!!):

1. Given the slower weight gain, is it really likely that DS is an 'efficient' feeder, or is he simply not feeding enough? And could this be contributing to my reduced ability to express? He doesn't ask for food more frequently (in fact some days now he sleeps through the 11pm feed so has one less feed in 24 hours). He has always come off the boob himself and will not go back on if I try to get him back on.

I wouldn't be concerned about his weight at all if I didn't know he'd dropped centiles but the fact is that he's moving further down the growth charts. Could his appetite be being supressed because he's not feeding enough (as adults, our stomach's get smaller, the less we eat, and vice versa...) or is the fact that he's not asking for food more frequently and is bright/alert/hitting milestones sufficient evidence that he's actually fine?

1. It feels like my milk supply has dropped despite the fact he must surely now need MORE milk per feed as he grows (and occasionally drops one of the night feeds). Is there any way I can up my supply particularly so I can express more? My DH is very keen to continue giving a bottle a day, as am I as I can put my feet up while he is giving that feed. If it wasn't for the possible dairy allergy, we'd probably switch this feed to formula now but we haven't been prescribed special formula and can't now use the normal stuff right?

1. Having got to 4 and a half months, would I be best off moving to (non dairy) formula feeding, when at least I'd know how much he was taking in a day, not have to stress about my own diet and not spend all evening trying to express so my DH can give a bottle??

Sorry, this is a long and rambling post. I have a myriad of questions whirling around my head at the moment and really just looking out for anyone who can offer some advice. Am so p'd off with the HV for getting his weight wrong at 12 weeks, as I might have sought some advice for his very speedy eating much earlier had I known he'd dropped centiles by then.... and have had big issues until very recently getting good advice on the eczema too....

Am knackered, bored of expressing, frankly kind of over breastfeeding and a bit worried that I'm starving my little boy and he's not looking for more food cos his stomach has shrunk or something!!

ok, it's absolutely normal for breastfed babies to gain quickly and then even out and plateau, which it sounds like yours has done
did they use the thrive lines? has he actually LOST weight or has he just dropped thtrough the centiles? are they using the breastfed baby charts?
when you say she converted the weight wrong what do you mean? IME they weigh and note the weight in kg... there shouldn't be any conversions happening unless you request the weight in lb rather than kg? but in the book it would be noted in kg

were you happy before you had him weighed? if so i would wager he is absolutely fine, and his weight is doing exactly what it should be doing

it might be worth talking to a breastfeeding counsellor though who would be able to check your latch and things like that to make sure he is feeding efficiently and that milk transfer is good

if you feel you need to boost your supply then the best thing you can do is to feed more frequently. so maybe offer before he asks, see if you can fit more into the day if he sleeps well at night

personally I believe the best thing for a child with allergies (in fact, any child coe to that) is breastmilk. if he is prone to that kind of thing then the protection offered him by your milk is even more important than ever, and I would be doing whatever it took to ensure that he got as much as possible!

I am almost certain that if he was hungry he would let you know!

have a look here

this is the breastfed baby chart from the WHO site

11lb something is def not on the 9th centile at 12 weeks, i make it above the 50th

it is entirely possible i am doing something wrong though!

Thanks TIY. Hopefully you're right that he'd be telling me if he was hungry. Would be interested to hear if anyone knows any different tho. I only really notice how quickly he feeds when I'm with other mums - they sit there with their babies for half an hour or so, whereas my DS is over and done in about a third of the time...

The HV at 12 weeks was just totally wrong all over. You're right she took the weight in KGs and wrote the correct KG weight alongside the incorrect LB weight in the red book, but I only do LBs so that's what she told me verbally and that's what I paid attention to. She said he was gaining weight fine but another HV has subsequently confirmed that this wasn't the case at that point (and seemed to think the error was my fault...fume). He hasn't lost weight, just plateaud. AFAIK our red book uses the breastfed charts. Not sure I follow the chart you sent but will have a proper look tomorrow after more sleep - he was definitely 9th %ile at 12 weeks tho and 4th-ish now. And yes they did use the dreaded FTT words .

Yes, he's healthy in every other way and I wouldn't be worried about it given his other developmental milestones (everyone we meet thinks he's very sparky if small!). But at what point would you notice there really was a problem? I would feel awful if he suddenly became ill and lethargic and it turned out that it was because I'd not taken proactive action! DH is out tomorrow so will think about spending whole day in bed with DS () trying to feed him as much as poss!

well i used a converter thing online to get his weight

so 6lb 11 was 2.8kg, which puts him between the red and the green line on the chart at birth (so roughly 25th as you say)

then using 11lb at 12 weeks (3 months) that converts to 5kg
AND i have just realised that I have mis-read it because it's very late lol
but that puts him bang on the lower red line, so not much below what he was to start with?

sorry, am confusing myself now, but it doesn't seem like a huge drop to me
there are sheets they can overlay the charts though, called thrive lines, and apparently it's only a worry if they have dropped through those? did they do that?

Have you cut out dairy, eggs and nuts yet?

I had a similar thing with ds (ebf to 6 months) - at 3 months he started to get eczema and it just got worse and worse, and he stopped gaining weight. After 2 months and loads of abs, creams etc, we finally demanded a referral to a paediatrician and I was told to cut out dairy and eggs from my diet. Within a month his skin started to respond to all the creams and he started to gain weight again. When we weaned him I used oatmilk with added calcium and never bothered with the formula milks (too lazy!). If he is meeting milestones and bright and alert it doesn't sound as if there is major concern. Having said that, a paediatrician's referral might be the best way forward, we were seen within two weeks of our referral because of ds' age and the fact he'd gained no weight for 2 months.

I cut out dairy and eggs and I will warn you that it can be a PITA cutting them out from your diet and you do have to do it thoroughly. Make sure that you read all ingredients in things as milk products get into the strangest things (last time I checked, tesco tomato ketchup had lactose in!). However, if your ds does have an allergy, just see it as practice for what you will have to do when he is weaned. My ds is now 18 mo and still full of allergies (to add to his dairy and egg, he is allergic to soya, fish, seafood and kiwi!) but we manage ok and his skin is nearly perfect - we only have to use epaderm emollient once a day. So it has been worth it.

I'm off to bed now, but I'll put a watch on this thread so if you've got any questions I'll do my best to answer them. The allergy threads are really useful too - worth checking them out if it turns out your ds has allergies

Oh, meant to say - apart from his first feed, my ds only ever fed for about 15mins and that droped to 7-10mins. After my dd who would feed for hours, it was a complete shock to the system!

Thank You! Great to hear from someone else with a speedy feeder. I do keep an eye on the allergy threads and will definitely continue to do so as we learn more about the eczema.

I have been dairy free for nearly 3 weeks and egg/nut free since Tuesday but have to say that I've not noticed any improvement in his skin and his weight gain haven't improved in that time. I also wondered whether this could have anything to do with my milk supply seemingly dropping - I normally eat tonnes of butter/chocolate!

Ekka - what was the Oat Milk that you used? Sounds v interesting. Also, out of interest, was your baby also quite sicky - I'm wondering whether that is an indication of the milk allergy. DS has a cold this weekend and overnight was massively sick - a whole feed for the first time. I've realised that I inadvertently had something with milk in it yesterday but not sure if the sick was related to his cold, or the dairy thing.

Oh and TIY - I shall get them to show me the FTT overlay things when I see HV this week. Thank you!

TIA!

bump

I use red oatly which is stocked in most supermarkets' free-from sections. Tbh I preferred to drink rice milk, but its not advised to give it to under 5's so ds has to have oatmilk, luckily he loves it!

Are you using Soya milk? Apparently a large proportions of children allergic to milk are also allergic to soya, so maybe try cutting that out. Also, are you sure you have managed to cut out dairy completely - it really does get into everything and it took me a while to get my head around checking all the labels. And eating out is a real minefield. Sorry if thats stuff you already have thought of/know about, I'm just thinking through the stuff I struggled with in the early days.

As for sickness - he was a bit sicky, but more what I noticed was his really smelly poos real rotten egg smells from when he was a tiny newborn (sorry for tmi!).

One thing to remember with allergy tests is that they are not always accurate in small children, we used them as a guide to things to cut out of my/his diet and then through trial and error found out what was causing the problems.

What have you replaced butter with? We use Pure sunflower spread which is dairy and soya free.

I also found egg replacer is handy and in fact that website is useful for other products too.

Slightly at a tangent, but what creams/other treatments do you use? Obviously it won?t make a difference to weight gain which is your main concern, but we tried both wet wrapping and dermasilk eczema suits and it made a massive difference to his skin.

Anyway, hope that helps. It?s a pita but worth it in the end

hehe i forgot to say that my second boy is egg/dairy free too (and thus, so am i)

like ekka we use the oatly enriched milk, and either Pure spread or the marks and spencer dairy free sunflower spread which i like a bit better

has the eczema improved since you cut out dairy/egg?
ds2's symptoms were:
long bouts of inconsolable screaming
eczema
horrid nappies
sicky

aftger cutting out the dairy and egg ALL of these cleared up. he was still a very needy baby, but we didn't get the hideous bouts of screaming any more

a friend of mine whose son has very severe eczema swears by a cream called Hope's Relief, I found it helped enormously with ds2 when he still had it as well. my friend's little boy was on steroid cream a lot, but she hasn't had to use it at all since using the Hope's Relief

btw, your body will always provide for baby first. so your milk will remain excellent unless you become severely malnourished, which is unliekly

if you do feel you need a "boost" though maybe start adding a little bit of olive oil to things- for instance, i always make my own pasta sauce and now add extra oil in to start with when i saute the garlic
i was going to suggest nuts too, but obviously no good for you! lol
um, avocados have good fat in... um
do you eat meat? if so then keeping the skin on?

thanks again ladies!

yes I'm using soya milk but will switch to rice/oat milk.

I can't stand spreads other than butter so am doing without any but using a lot of olive oil instead! Only been off eggs/nuts since Tuesday and can't say I've noticed any changes yet.

Since cutting out the dairy the nappies have definitely improved but skin is still bad - and he is still itchy. We are using: cetreban emolliant, eumovate or 1% hydrocortison for the bad bits (were using daktarcort on the face), epaderm as a soap substitute and dermabath. But we have tried a tonne of different emolliants and honestly I don't think any of them have done too much good. Eumovate seemed to make things a bit worse as well. Was also told by friends to try Aloe Vera. Doesn't seem to do much though. Will def have a look at the Hopes Relief. GP told me to try wet wrapping but doesn't seem to be available in small enough sizes - will remember to ask again at next hospital appointment.

Really feel like milk supply is very low at the moment. Put DS to bed at 8 tonight (later than normal) and he was awake again for a feed at 1015. He normally does 7 til 11 no problem.... What a pain.

Thanks for your help - seriously. Am really appreciating the support. I'm away for a few days but will check back at the end of the week.

p.s. not a veggie thank god. All I'm having for dinner is meat + 2 veg and eating a LOT of pate. Would have starved by now otherwise.

well if your supply has dropped (and i honestly can't see any reason why it should) then he will want feeding more often
and the more frequently you feed the quicker you will boost your supply. so go with the flow, feed whenever he asks (and maybe even when he doesn't!) and I am sure all will be fine

These are the cotton wet wrap clothes which we used for a while - they were good, but wore out quickly and were too hot in the summer months.

These were a godsend for his itching. We got them for the summer and it really helped, as they are silk they aren't so hot, but were soft against his skin and meant he couldn't scratch, plus kept his skin nicely moisturised. They are also available in 0-3mths sizes. You don't wet wrap with these, they are just used after putting on the usual creams that you use.

Both are available on prescription though you may have to push hard to get the dermasilk ones as they are expensive. However they wash well and last unlike the cotton ones which wear out in a few weeks. You'd need at least two body suits and two sets of leggings with either option (if you are doing wet wrapping you'd need at least 3 of each)

What is the course of action your HV is taking at the moment? OTher than the allergy testing and worrying about his weight?

Oh, forgot to mention some great allergy cookbooks:
This is great for cakes - a real godsend for me when I couldn't eat chocolate!

This has some great ideas for kids - we use some of the recipes in here a lot especially the dairy and egg free american pancakes.

This has been useful once ds was weaned

BordersMummy... in a rush atm but do keep it up. DD reacted to milk, egg, soya in my diet. Her eczema went totally out of control; I recall looking at her and thinking 'urghh, you are disgusting' . It also got infected and once we managed to get this under control, it did reduce the itching a lot. We used to wash the area at least 3 times a day prior to applying the antibiotic cream. We also found that washing eased the eczema... use lots of moisturiser immediately after though to circumvent the dryness. Nearly three years later, she is classed as allergic to milk and egg, possibly nuts and tomato, BUT her skin is clear. Also, from excluding something from the diet, it would take 2-4 weeks to clear up for DD.

Good luck and it is hard work but if it helps you understand what is going on, it is absolutely worth it. It's also good that yuou are seeing dermatologist etc.; our GP and paediatrician were both very sceptical about exclusion diets and a relationship between food and eczema. They have both admitted they are amazed by the difference so I hope it helps other young children when they come across them.

Thanks all. I can't reply in full at the moment but just wanted to say I really appreciate the advice. Will respond properly in a couple of days.

DS2 had similar problems with exzema starting at about 3 months. We went to see paediatrician after he reacted badly when givine formula for first time at 6 month.

He thought it was a dairy intolerance.
DS2 now on dairy free diet. I am supposed to be too but find it is OK as long as I only have limited amount of milk and no cheese! (still BF him)

He has been given Nutramigen on prescription (formula). It tastes foul so he won't drink it but I do use it for his cereal at breakfast.

I have also started to use only Fairy for washing his clothes and I also double rinse them too.

This along with all his creams and gels and lotions seems to manage the exzema OK.

Hi sorry for not being back in touch all week as I have been away and not able to access MN. I really really appreciate the advice. I am going to see the specialist next week and now have a raft of better questions to ask.

In the meantime, DS's eczema is doing ok. Not as bad as it has been, though not brilliant either. He is eating well and his nappies seem to be quite good -better than they were. So perhaps the exclusion diet is doing some good...

He is still itchy though, particularly his body and legs, so we are certainly not out of the woods yet!

I would really like a prescription for some formula, as I am totally over expressing and for nights when I want to go out/have a drink/or let my DS have an input I really would now like some formula to help things out. Now we're past 4 months (in fact nearly 5) I think that's ok, but do tell me if I'm wrong.

Latest thing is that I'm getting terrified about weaning. What do I do in this situation??

p.s. ekka just wanted to answer your question:
'What is the course of action your HV is taking at the moment? OTher than the allergy testing and worrying about his weight?'

HVs where I live are pretty useless to be honest (tho nice). They are only bothered about centiles, so are concerned her is moving down, but as we are seeing skin specialists they seem to have taken an assumption that this is where the issue lies and so haven't said anything else. To be fair, I'm ok with this. I would not want to be hassled by then and since he is in every other way a happy, chirpy, chatty, alert lad I am not concerned. Just want to get his skin sorted really and see any weight issue as a symptom of the same issue rather than anything to worry about of its own rights really. (This week anyway!!!).

The warm weather probably isn't helping your ds. Ours is back in his dermasilk suits tonight as he was so hot and itchy . Glad you are feeling positive about your ds development etc. Some HV are irritatingly obsessed with those growth charts. At least you are being seen by specialists as well.

One other thing I thought of - if you are avoiding soya, watch out for bread - most shop bought sliced bread uses soya flour in it. Its really frustrating! However, Waitrose does this bread which we use.

Are you seeing a dietician? You should ask to be referred to one I think for weaning - they can help you out making sure your ds is getting enough calcium and fat in his diet.

Weaning at first is really basic - so veg and fruit should be ok (though if you do see a dietician best ask if there are any fruits that are considered higher allergy risk and avoid them at first - we just discovered ds is allergic to kiwi and it was a rather scary reaction, not something I'd have wanted to see when he was younger). We got prescribed Nutramigen to make up his cereal, but he hated it, so we rapidly went over to oatly. And then build meals around food he can have, meat, fish, veg, pasta (obv not egg based!) its reasonably ok. The issues we found with weaning are baby food often has milk powder in, so you have to read absolutely every jar, and you just have to get used to asking waitresses etc about dairy/egg/soya free options when eating out. I bf ds till he was 14 months, but after 12 months started giving him cups of oatly with breakfast and supper, so the transition was fairly smooth. If you want to stop bf now, or at 6 months then I'm sure you'd need some formula prescribed. Just be warned, Nutramigen is vile smelling and tasting, so your ds may not take to it right away. There are other options, but they cost the NHS more, so they usually ask you to try Nutramigen first.

Ekka, this is fab. Thanks so much. Appointment is tomorrow so will let you know how we get on. His skin is so much better this week so perhaps the fact I'm off dairy (4 weeks now) really is making a difference. He's still itching though, particularly his legs with his feet at the moment. I will definitely try and get a dietician appointment.

Is there any reason why we shouldn't be able to use Oatly from 6 months? to avoid the Nutramigen route).

Unfortunately ds still itches - he now tells me he is 'scratching' bless him and does try and stop when I tell him to but he's still only 19mths so he does scratch a lot. The difference is that his skin is much more 'normal' looking - it used to be full of red sores, really weepy and bleed if he rubbed it or wore anything like denim. Its good that his skin is improving. It really does take time - at least 4-6 weeks to clear out of your system and his and see improvements. I hope it all continues.

The main issue with Oatly is lack of nutrients. Basically up to 1 year you are advised to bf or give formula and then move onto full fat milk. So Oatly would definitely not replace formula as it wouldn't have the vitamins or fat or calories that you get in either formula or breastmilk. After 1 on the advice of a dietician it can be ok and be great for ensuring they get their daily calcium, but you have to make sure that your ds gets plenty of additional fat in his diet as Oatly doesn't provide that and if I remember rightly, fat is very important for their development.

Really you should push for a dietician appt -I'm not an expert in any of these fields, just someone who's been there! They'll be able to give you the most up to date advice... Personally I stuck with bf as it had worked for me with both kids and so making up formula seemed more effort, but it all depends on what works best for you - plenty of people do manage with Nutramigen (in fact my friend's ds still loves it age 2).

It would be good to be kept updated on how it all goes!

Right...update. Got blood test results today and there is no milk allergy - yay!! But the bad news is that he has severe egg and peanut allergies. Boo! Makes sense as I've seen a real improvement in the last couple of weeks which there wasn't when I was just off milk. But the good news is that I can use normal formula - phew.

Haven't got a dietician appointment yet and we 're seeing a gastrenterologist next as there are some other issues, but hopefully there is light at the end of the tunnel! Think I'm going to replace last feed of the day with formula so I don't have to spend my night's expressing so DH can give a bottle AND I get to go to bed earlier too. Phew.

Now need to figure out how to manage the egg/peanut allergies. Have already had some really useful tips from here.

Thanks ladies.