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will ds really refuse dairy free formula like hv said?

(50 Posts)
ariane5 Mon 22-Apr-13 21:40:21

Ds2 was 1 last week.

He has cmp/egg allergy. Waiting for an appt to get a dairy free milk prescribed. HV previously had said try aptamil pepti as its the nicest and hopefully he will not react to it or will need diff formula.

Got him weighed and saw her today and she said he will prob completely refuse the dairy free formula when we try it as he is too old?

Surely that's rubbish-babies try new foods/drinks all the time, some they like some they don't?? Ds1 had neocate from 5mths and dd2 neocate from 7mths then changed to alpro 1+ at 18 mths old no problem.

Up untill now he has been bf and had a small amount of alpro but too much upset his tummy so we stopped giving it.

Does anybody have any experience of introducing dairy free formula to a 1 year old or is it same as for younger babies? I really thought that when we got some he would try it and gradually get used to it but hv seemed sure that he won't like it??

They are foul, as I said today on another thread, although Pepti is the least worst option taste wise.

My friend's son has PKU and was on it from birth and they still had to flavour it

Could he not just go onto KOKO /KarA coconut milk or an almond milk of something?

We tried introducing Neocate when DS was around 10m, he'd been BF until then. He never took to it and I've ended up extended breastfeeding.

He was ok with Neocate in food though, so I found it useful for cereal rather than expressing. At around 18m we started using Oatly oak milk instead, and DS will drink it flavoured with Nesquik.

Aptamil pepti is foul I found the only way dd would take it was to make sure it was really really warm.

OpheliasWeepingWillow Mon 22-Apr-13 21:49:56

Unfortunately my dd won't touch Neocate and isn't good on food so she has to be tube fed shock

Neocate is vile. We tried Nesquik, Golden Syrup... Everything first

OpheliasWeepingWillow Mon 22-Apr-13 21:50:12

Sorry we transitioned to Neocate at 1yr

JedwardScissorhands Mon 22-Apr-13 21:51:35

What about goat or buffalo milk? My CMP intolerant DS drinks buffalo milk.

TiredFeet Mon 22-Apr-13 21:53:38

It seems very unhelpful of the health visitor to be so negative, did she not give you any solutions! I hope you find something that works. (DS is a neocate drinker and I remember the fear he wouldn't take to it, luckily he was only 6 months when diagnosed.)

Runningblue Mon 22-Apr-13 21:57:29

Hv is being a bit simplistic. The taste of the hypoallergenic formulas like neocate are pretty foul, but as long as you do as slow an introduction as you can manage, youve a better chance of getting the baby on to it.
I was weaning from breast mik to neocate so i pumped off milk. I then fed the baby with a ratio of 1:7 neocate to breast milk, then we he was happy with that 2:6, then 3:5 etc
We did it this carefully because we first tried to just give ds a straight bottle of neocate and he was repulsed, put him off bottles full stop! So we resolved to do it slowly and the patient method paid off....

trixymalixy Mon 22-Apr-13 22:00:24

It is vile. DS wouldn't touch it and he was 6 months when we first tried. I just kept bfing in the end.

I know that people have had success with mixing it with Nesquick.

Runningblue Mon 22-Apr-13 22:02:07

Ps we saw a dietician about ds's milk allergy. At some point over a year , she was happy we were findimg other sources of calcium for ds's diet, so we werent reliant on him drinking neocate(he was going off drinking lots of milk)
She was keen we gave readibrek for breakfast as it is fortified, and she was impressed with the oatly vitamin enriched milk.
Oatly is nice to drink, and is easy to cook with. The oatly cream is also good for puddings sauces etc.
Just a cautionary note that milk allergy babies are often a bit iffy with soya - ds was.

Jedward - sorry to thread high jack, but is Buffalo milk ok for CMPI? What does it taste like? And where do you get it from?

Locketjuice Mon 22-Apr-13 22:06:15

My son was about 9 months I think? He took to it fine smile

cece Mon 22-Apr-13 22:08:47

DS2 was prescribed Neutramigen. He was bf and never really took to it although he would have it in food. In the end I bf him till 20 months.

ariane5 Mon 22-Apr-13 22:54:59

I would prefer ds2 to have a formula like pepti/neocate as I know it has everything in it as far as vitamins etc. Ds1 especially had problems with weight (and at 6 y o is still on neocate advance) and ds2 is very small like him. Ds1 had neocate from 5 mths though.

He did like the koko we tried a little bit at the weekend but I want to make sure he is still getting all the nutrients he needs as he is a very poor eater.

I'm surprised at HV, I can't imagine her saying that a 1 year old would refuse a new food so why would she assume he will refuse a different milk? I really want to just use it in porridge etc and 1 feed a day and if he has to be looked after by someone else.

All you can do is give it a go. Perhaps try after a bf so he's not starving and distressed.

HV I would say really don't have any idea what babies will or won't drink. I swear they believe they live off milk shake and chicken nuggets. All babies are different but all need the chance to try new things. He may or may not take it. Unless she's a qualified psychic she doesn't know !! smile

narmada Mon 22-Apr-13 23:02:32

I am sorry to say that your HV might have a point. Neocate is not just meh, it really does not taste like a foodstuff. IME pepti is better tasting.

We tried intriducing Neocate at about 4 months. Not a chance. Not even with nesquik, sugar, very gradual weaning etc.

Having said all this some kids take it no problem. It's got to be worth a try...

ariane5 Mon 22-Apr-13 23:07:15

I just can't believe how easy it was with dd1 (only one of 4 dcs without milk/egg allergy)! I really took it for granted!

For now till I get a formula for ds2 the koko seems a good option for porridge as alpro 1+ seemed to be slightly affecting him. I am hoping he will be ok with pepti as he seems more like dd2 than ds1 (who has a v severe allergy) so I'm hoping the pepti will be tolerated and it will give me hope that he will grow out of it. Dd2 seems to be improving but ds1 not at all.

I really need a rest from bf too, due to his food problems he feeds so much and I'm exhausted so if I could replace just 1 feed a day itd be a big help.Just really a bit fed up the HV was so negative.

Its pretty horrid, and DS clearly preferred his sisters non-dairy free milk when he stole her bottle, but he has nicely transitioned onto Lactofree milk by as his intolerances got less severe, whilst she (both 18mo) now refuses all milk including super fresh creamy full fat loveliness! Argh!

mumat39 Mon 22-Apr-13 23:21:21

We did what Runningblue suggested above, but we increased the formula by a spoon a day so by day 7 it was 7 ounces of the formula.

Dd and DS were put onto nutramigen, which is also vile smelling stuff and they would only have it in a bottle and wouldn't have it in food or on food.

We tried moving them both onto Kara which they really liked when they were a bit older, but they both initially got constipated and then had diarrhoea on it. The GP and dietician thought it might be to do with the sugar fructose.

The gp advised us o go back to nutramigen again, which we did one spoon at a time and again by day 7 they were back onto it. At this stage dd was 3.5 and DS was 1.5 years old.

Good luck.

Would it help do you think to try boost the fat/calorie content if what he does it? Oatly do a cream, could be good for stiring into mashed potatoor porridge if he eats that? Fat could help him feel a bit fuller and reduce his need to feed so much.

mumat39 Mon 22-Apr-13 23:24:35

I think at one point we might have done half a spoon swapped for half an ounce too. Hope it works for your little one.

golemmings Mon 22-Apr-13 23:30:24

DS went on to neocate at 11mo and never had a problem with it. He has it on cereal, as a drink, in custard...
Mind you, DS doesn't have a problem with anything (except dairy); he just eats!

JedwardScissorhands Tue 23-Apr-13 07:11:38

thereinmadness buffalo milk can be ok for CMPI. Our Sainsburys has it. Quite expensive (£1.99 for 750 mls) but worth it.

OP could you not just buy a vitamin supplement? Neocate etc are vile.

ariane5 Tue 23-Apr-13 09:19:20

Its not just the vitamins its the fats and everything else I think I am worrying too much as ds1 has had a very difficult time with food/weight/illness and I don't want ds2 to go the same way (he is identical build etc to ds1-very small) .

MERLYPUSS Tue 23-Apr-13 09:30:58

I know very little about CMP intollerance other than OH cant have cow's as it makes him itch - no other symptoms but he knows if he's overdone it by having cheese or such.
At a year does your child need formular? The only reason I ask is because DTs love soya, sweetened or otherwise, and almond milk that OH has for tea and coffee.
Like I said, I appoliogise if I've something glaringly obvious.

ari I think if he doesn't take the formula then the next best thing would be to go with the KOKO he did drink and supplement with vitamin drops. Then add extra calories and fats to his food. Coconut oil in porridge or olive oil in spaghetti Bol etc. perhaps look into stocking up on high calorie snacks. Nut butters on toast, hummus (u can add extra oil to that). Make rice pudding with oatly cream. Would he eat a curry with lots of thick creamy coconut milk ? X

Ground nuts/flax seeds would also add extra protein

ariane5 Tue 23-Apr-13 10:59:00

I am not sure about curry he is still on very small amounts of food (completely smooth purees or teeny bits of grape/banana/cucumber/bread and sunflower spread).HV said he shouldn't still have reflux at all at a year old but he can't tolerate much food at all.

He did seem to like the koko (so did ds1!) So might use that for now. Avoiding nuts for now as gp said to wait till he has allergy tests as ds1 has problems with brazil/cashew nuts.

veganvillage.co.uk/recipes/beanpate.htm would something like this but made really really smooth be any good?

Again u can stir in extra oil and beans are very good for you. ( just trying to think of how to max out fat and mineral intake in small amounts x )

You can get cans of extra thick and creamy coconut milk. Mix a bit in with the KOKO perhaps?

I'm on my phone so can't scroll back very easily, have you seem a dietitian for him?

ariane5 Tue 23-Apr-13 11:19:40

No we are waiting for the appointment but It will probably take a few weeks.

Will try and get some of the oatly cream/coconut cream it sounds like it would be quite good.
That recipe sounds ideal I might try it, also think he would like hummus too so will give that a try.I am just really aware that he is suddenly looking thin and a lot smaller than friends babies who are 7/8 mths old. He has had a lot of infections lately and currently on anti b so I want to build him up and make sure his diet isn't lacking in anything.

Perhaps look into some probiotics for him too. Those ABs won't be doing his tummy any good sad had the dr ruled out any medical reason for his inability to tolerate food?

simpson Tue 23-Apr-13 11:25:53

DD went onto neocate at 10 months with no problems, she even liked it! Odd child! grin

She is now 5 and tolerates lacto free milk.

ariane5 Tue 23-Apr-13 11:31:49

He does have other health problems (EDS and pectus excavatum which affects his chest) but doctors say it is unrelated to food problem.

He had severe reflux and would often set his apnoea alarm off as a small baby due to it. He has never tolerated solid food well and vomits a lot.

Sounds like that's something that needs looking into. It's easy to put it down to reflux as a baby but usually when they up right and walking about and eating solids it usually stops or certainly lessens. Perhaps you need to go back and insist on an X-ray x

ariane5 Tue 23-Apr-13 11:51:11

I think I might ask them to look at him again as its a real problem I try to give him more sometimes but he gags then everything comes back. He does that if I have dairy and bf feed him but if I drink coffee and feed him he is violently sick so he def has triggers. Any food that's too thick does it too but little tiny bits of grape/cuc etc ok. Banana he gags on but manages and bread too. He always has a cough too and sounds 'rattly' poor thing.

Will ask for x ray, it can't do any harm to have a proper check thankyou.

I really hope they can help him. Sounds like you need a break from feeding him all the time and its not normal
For him to be struggling to eat sad now that he's one and they can't use the " food for fun" line hopefully they will do something . I will keep my fingers crossed for u and your little ds xx

BedHanger Tue 23-Apr-13 11:58:02

A little left field perhaps, but what about homemade chicken/beef bone broth? And Yy to coconut products - fantastic source of healthy fats.

ariane5 Tue 23-Apr-13 12:01:31

Ds does love pureed chicken casserole (he has it with potatoes and carrots and watered down so its v thin).

Where do I get coconut products? Health food shop or will supermarkets sell them ?

Coconut oil is available in holland and barret and the oat cream. And the supermarket should stock the thick and creamy tinned coconut milk.

BedHanger Tue 23-Apr-13 12:34:21

Great - bone broths are highly nutritious and cheap (do you have a butcher nearby? They will sometimes give you the bones/carcasses for free). Crack the larger bones with pliers, chuck in a pot with carrot, onion, celery, add a dash of vinegar to help draw the minerals out the bones, cover with water and cook over a low heat for at least 10-12hrs.

After cooking, you can also bang the marrow out of the larger bones onto a wooden chopping board and feed DS that too.

IMO, better for bone (and all round) health than dairy anyway!

Runningblue Tue 23-Apr-13 15:10:24

At the height of ds's slow introduce to foods- he kept coming up in hives- i used to make casserole- stewing meat like lamb or beef, cooked with carrots, parsnips, onions and a prune or two, or apricots, topped with water and cooked slowly for 3 ish hours. I thrn used to puree some of the veg with the drained liquid to make gravy, then added back to the pot with the meat and veg. It turned out really well, and didnt need flour to thicken it. Full of goodness...

hwhite6 Tue 23-Apr-13 17:56:38

Ariane, I might be barking up the wrong tree completely or sticking my nose in, but has anyone mentioned Eosinophilic Esophagitis (EoE)?
I'm not sure it's easily diagnosed over here yet, but its becoming more common in the states now (that's where most of the info/details currently come from anyway). It certainly sounds like your ds2 has more going on than just a dairy allergy... Hope you get it sorted quickly.

TinyDiamond Tue 23-Apr-13 18:55:47

after 1 year they can have neocate active. it comes in regular or black current flavour. did has blackcurrant. yes, bit weird but much more palatable. its still white powder like the others and comes in sachets rather than a tin

MistyB Tue 23-Apr-13 20:22:11

If he doesn't take to nutrimigen, you can get the essential fats in other ways. Look at the nutritional content and see what it is you think you are missing, it might not be as difficult to find from other sources as you think.

If you are breast feeding, you mentioned drinking milk, are you completely avoiding as it will be passing through. It does sound like there are other things going on that need looking into. The gagging could be something else passing through your breast milk. Before my DS was diagnosed with peanut allergy, he used to gag and in hindsight I can pinpoint a number of occasions when it was after I had eaten peanuts. And with everything else you have said, I think I would be avoiding wheat too.

I've just had a consultation for my DS's analysing their fat levels and advising where we needed to supplement and how so allow me to share
Myristic Acid from Coconut oil
Oleic Acid from olive / sesame oils (though sesame is a frequent culprit for allergies)
LNA: walnut, flax, rapeseed
EPA: fish
DHA: fish
Linoleic acid: sunflower and walnut oil
GLA: borage oil
DGLA and AA - but we were ok so I don't know what the sources of these are.

He suggested mixing the oils and using the mix on vegetables, stirred into cooked rice, on salad but as small boys don't each much salad, that doesn't happen!!

We use the vegan omega swirl from Barleans as is it super easy to give and I also mix in probiotics.

It sounds like you are having a really tough time. Wishing you all the strength you need to look after your babies. I hope your health professionals find some answers to help you. xx

ariane5 Tue 23-Apr-13 22:16:34

Ds1 had something called eosinophilic pustullar folliculitis as a baby- his whole scalp was literally a mass of festering sores and boils at the age of 3 months old, it was treated for 2 months as impetigo then after blood tests, swabs, cultures for fungal infections a rast test was done and as soon as cows milk removed from his diet it cleared up in just over a week it was amazing.
I did not know eosinophilic (what is that???) Can cause other problems too I will try and look it up.

Yes I have now cut all dairy out of my diet, before I had just cut down and was having milk in just 2 cups of tea a day but then cut that out too.

Ds1 has neocate advance and I have been tempted to give ds2 some as gp wouldn't prescribe yet for him but then I didn't want to give it unnecessarily as he might not be as severly allergic as ds1 and possibly could tolerate the pepti? Dd2 is certainly not as allergic as ds1 so I am not sure what to do about ds2.

Info about all the types of fats is great I think he is missing out on a lot. I am bf him loads but I am run down so doubt my milk is the best quality.

GirlOutNumbered Tue 23-Apr-13 22:20:58

I breastfed for 13 months and then son went straight onto calcium enriched oatly milk. Dietician had no issues with it. Lots of cultures dont drink cows milk.
You should ensure though that they are having a good and balanced diet.

My youngest son also has CMP and I have never been able to give him nutramigen. He actually cries and Ive flavoured it with everything!!!

MistyB Tue 23-Apr-13 22:27:07

I googled the wrong milk - sorry.

You can (and should!! It's amazing how we forget ourselves in all this looking after our children business, they need us to look after them and for that, we need to be healthy!!) supplement your own diet too. Double whammy of you being stronger and it passing through to your breast milk.

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