Help! so confused- milk allergic 8mo DD very small, poor eater and I have to go back to work

[mamadoc]

DD has been bf up to now and weaned from 6mo. She is eating 3 meals a day now but quantities are small and its hard to give high calorie stuff with the dairy allergy. She still has 4 bf in day and one in night

She was always tiny 0.4 centile but now has fallen off charts altogether.

I have to go back to work next month (3 full days) and it isn't an expressing friendly job plus I can hardly express anything anyway.

I had really hoped to just bf am and pm on work days but with the concerns over her weight and allergy I guess its not a good idea.

Do I have to get a dairy free formula for the daytime? Can she have soy? What about just rice milk for drinks in day if I carry on bf when with her.

My GP said ask the HV. HV just kept saying I should express she said soy isn't recommended and there are no good substitutes. I was hoping to be referred for specialist advice but they don't seem that bothered.
V. confused and need a plan please help.

[mummypig]

hi thought I'd reply partly just to get your msg back in active conversations. i had a milk intolerant ds1 but he had soya formula from about 8mo until he developed a soya intolerance too (projectile vomiting - lovely). So although I would second the advice to avoid soya, and wish our HV had been that useful, I can't exactly help with your current situation.

My ds2 was pretty small and exclusively bf up to about 6 months. I started him at the nursery and provided them with his meals plus expressed milk but he really hardly took any from a bottle, just waited until I was around to feed him. I think many bf babies do this. So you may manage to get round the milk problem but I can understand if you're worried about her weight gain.

I'm surprised you haven't been given any specialist help - is this because the medics/health professionals aren't recognising the reactions to dairy? did you 'diagnose' it yourself? I know that many medics didn't want to believe me about ds1, although I checked it very systematically several times (avoiding any milk in my diet for ten days initially, then reintroducing it, then avoiding until he was 6 months, then reintroducing it... each time his reaction was pretty clear). But eventually we did get referred to a dietitian and she provided us with info about making sure that he had enough calcium and calories in his diet. Tbh he always ate pretty well so I just made sure we used calcium-fortified orange juice and other sources of calcium. The vegan society website was good for finding out about non-dairy sources.

on the more strident side, even if your job isn't 'expressing friendly' they are required by law to give you enough time and a private space for expressing. but I know it might be hard to insist on this

also it might help if you get a different pump. I hired a 'hospital grade' pump and although it made me feel a bit like a dairy cow I got far more from one of those than I ever did from one you can buy over the counter. You would definitely need a private room to use one in, though, it's not the kind of thing you can subtly carry in your bag to the loos!!

hoping someone comes along with slightly more helpful suggestions, but thinking of you

[mamadoc]

Thanks so much mummypig.

DD comes out in hives when she has any cows milk, formula, yoghurt, cheese. I photographed it and took her to GP. He said it seemed fairly obvious and we didn't need any referral (which surprised me) and that HV would have seen it many times and could advise.

I used to be able to express a decent amount but now I just can't seem to get any let down. I tried all day today and got a sum total of 10ml! My work is in community psychiatry so I have no office and spend a lot of time out and about plus its very unpredictable.

[wb]

I had a similar situation to you with my ds (except he wasn't quite so small).

you may find that expressing works better when you are doing it instead of feeds, rather than as well as. Your work place has to make allowance for you to do this legally, so don't be afraid to push them (tho in my case what I got was a chair in the stationary cupboard!)

One option which I'm surprised no-one has suggested is one of the 'special' formulas (made from cows milk but with the proteins broken down so suitable for cows milk allergic infants). We use Pepti but there are other brands too. You get these on prescription from the doctor (which is good cause they cost £20 per tin but also may be why he's not keen to offer).

Maybe go back to your health visitor and say this is the route you want to go down and get her to recommend to the doctor? I agree that soya formula should be avoided and rice milk etc are no substitute for breast milk/formula - esp if your daughter is v. small (ds is still getting formula although over 2 years now cause of his size and he has never left the growth charts)

Good luck

[moljam]

are gp was same when saying ds has cows milk intolerance.basically just get on with it.ds is ok with goats milk.
there are lots of good books,websites for weaning dairy free.i'll try to think of some-im in dopey mummy stage at the moment-too cold to think!

[itscoldtoday]

No particular weight probs with my kids, but wanted to sympathise about your work situation. I'm lucky my CM lives up the road from the surgery, but the unpredictability of the work mens that trying to rush out to bfeed a child and rush back in the middle of being on call...well, you can imagine!
I spent ages expressing in the time running up to going back to work to build up a stock in the freezer, have you tried both manual and electric pumps? (you could manual pump in the car...do you work in a city?!)
You might find your supply adjusts to feeding different amounts different days - are your days of work consecutive or not? Or you might need to just drop the mid-day and substitute alternative milk.
I confess I don't know a lot about alternative milks, but can't see why soy should be a problem. My dsis switched to ffeed for lunch milk and bfeeds am and pm when she went back to work at 6m, and her supply was ok. When I went back to work I actually encouraged night feeds to try and keep the bmilk intake up, knackering but made me feel better!
Not much practical advice, just sympathy!

[ellymae]

my dd has just turned 9 months and has a dairy allergy as well. She came out in a nettle type rash all round her mouth within a couple of minutes of eating some veggies cooked in milk and cheese so it was very obvious that she had a problem.

As a separate health issue, my dd also has cystic fibrosis but this at least means that I have access to a specialist team of health professionals including a dietician. She prescribed a prescription only formula called Neutramigin (think thats how its spelt) which is great for babies who are both allergic to dairy and lactose intolerant. The downside is that it tastes disgusting and dd wouldn't touch it. We then moved onto to Cow and Gate Pepti - again on prescription only - which is is great for dairy allergies but not lactose intolerance. It doesn't taste as bad but dd still wasn't keen. So my solution was to slowly mix in the formula with expressed breast milk, increasing the amounts every day. So day one I added in 5% formula, day two 10% formula and so on til we are now at the point where she will drink a bottle of 90% formula and 10% breast milk. Nearly there!! It has been a long and slow process and you may not have the timescale you need but it can be done!

As to alternatives to formula milk, we were told that as dd had an allergy to the protein in the cows milk then she should keep off goats milk as well as the proteins are too similar. However, I had an argument with my SIL over Christmas about this as she has been told different about goats milk but with the reaction that dd had I'm not prepared to put her theory to the test! Also, as a lot of children with a dairy allergy go on to be allergic to soya as well, we've been told to keep her off that for now but might be able to try it once she gets a bit older (perhaps around 1?). The dietician didn't recommend rice milk as its too sweet but there wouldn't be a problem health wise with her having it.

I'd go back to your GP and get them to prescribe one of the specialist formulas for you
Hope this helps!

[mamadoc]

Thanks so much everyone. Looks like I need to go back to my GP and get one of these prescription formulas then somehow induce her to eat it.
I was trying to build up a freezer stash of EBM but so depressed by yesterday's poor effort. Have tried manual and electric was even thinking of hiring one of those double ones if it would help. Also quite worried that if I build up supply now will be very uncomfortable at work.

[MumtoJoe]

Mamadoc I was about to post up a similar message to you. My 5 month old DS has cow's milk protein allergy (lots of violent puking after Aptamil)and his weight was dropping off as I am bf but can't keep up my supply to match his demand. We got referred to the paediatrician who has prescribed Pepti and has asked us to come back to talk to the dietician when DS is a few months older. You should definitely insist on being referred as this is really hard to manage on your own, especially the weight gain stuff (we got referred on the basis DS went from being on 50th centile at birth to 9th).
My problem now is that I can't persuade DS to drink the Pepti...he just screws up his little face and cries. Will try mixing with breast milk as suggested (thanks Ellymae) and anything that has worked for anyone else would be really welcome!

[wb]

We did the same mix n' match mumtojoe and ds was drinking pepti straight in a little over a week

[hardygirl]

A drop of vanilla essence in a bottle of Pepti can work well. Alternatively (and don't throw anything at me) our dietician recommends a small spoon of a Nesquik type powder in the bottle (obviously Nesquick = Nestle = bad), but there are various other options from other companies. It doesn't stay in for ever - you just decrease the amount you add over a few days to acclimatise them to the Pepti taste and you should be on plain pepti within a week or so. The sugar content won't cause any problems for such a short time and it's worth it to get them established on the Pepti.

[bunnyhunny]

I agree with everyone on here
ds has (had? we tried him on yogurt today..) milk allergy and also soya allergy. Within 4 days of taking pepti milk his eczema cleared up completely. We were offered nutramigen first, but it tastes like shoes...
soya and milk allergy are closely related so go for pepti if you can

[MumtoJoe]

Great - thanks so much to all for suggestions. Am a new member and it has made me feel much better to know it isn't just us struggling with this milk allergy business!

[MumtoJoe]

Final message from me ten days on - we are happily on straight Pepti several times a day now after having tried the nesquick trick (thanks again hardygirl, you're a lifesaver!). Having refused to have as much as a sip, DS guzzled almost the whole bottle when we put in half a teaspoon of strawberry nesquick. Then reduced nesquick over the course of the week and now he drinks neat Pepti quite happily. Really worth trying if anyone is having trouble persuading the small people to have their prescription formulas.

[wb]

Thanks for the update - its good to hear that things are working out