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Allergies and intolerances

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Struggling to get LO to take Nutramigen AA

8 replies

Lplateson · 02/12/2010 17:44

HI there I'm new to mumsnet but am hoping that someone can provide me with some advice.

My LO has been diagnosed as having lactose intolerance and a possible cows milk protein intolerance. She also appears to have a silent reflux (but I am aware that the symptoms are quite similar to CMPI so I'll come back to this). Initially she was prescribed C&G pepti jnr which she seemed to take to well but within a couple of weeks the screaming, arching of back, terrible tummy pains after feeding etc started again and after taking her back thru A&E she was given nutramigen AA & omeprazole. Whilst the meds appear to have calmed some of the reflux symptoms her taking of nutramigen was very hit & miss so we tried mixing it with pepti to make it more palatable but within a short period the tummy aches started again (to the point where it was taking a hour after feeding to settle her - during the night feed she was waking herself up in pain). We think that this is a result of the milk proteins within the pepti (just our view) so we are giving her nutramigen exclusively however her taking of it is still hit and miss - she has episodes of screaming inconsolably after taking a couple of fl oz when the bottle is put near her. We aren't sure if this is the taste or simply that the meds for reflux aren't working or whether it is trapped wind.

I don't know if anyone has had similar experiences with the formula and whether anyone has any tips for making it more palatable. I'm keen to try & establish whether the problem is the formula or the reflux. Please help!

OP posts:
littleweed10 · 02/12/2010 18:10

Hi there

I can confirm it took us a while for DS to get used to neocate - it is very unpleasant to taste (but apparently nutrimegen is worse, if thatis any consolation)

Our boy certainly was repulsed when he tried it neat, so had to very gradually get him used to it (I was breastfeeding so expressed milk and used it to gradually increase the ratio of neocate)

so I cant say for sure clearly, but her reaction might be related to the taste rather than the reflux.

good luck, you're doing all thr right things - and think positive, at least the hospital are interested and giving help:)

Lplateson · 02/12/2010 19:36

Thanks littleweed10

I am quite worried that it isn't just the formula that is the problem hence why I want to see if firstly I can try to make the feed more palatable for her. The reason I think it may not be just the feed is because yesterday she had a couple of feeds where she easily took 4-5 fl oz of straight nutramigen (which is good for her) however today she has been howling inconsolably after 2- 3 fl oz and is only happy when she is being held upright and even then she is bringing her legs up and she is letting out a high pitched cry. Once she has calmed down (and provided you don't reintroduce the bottle she is ok.

I have an appt with the paediatrician in January but I think I will have to go back before then if this carries on

OP posts:
hwhite6 · 04/12/2010 15:47

From your second post, it certainly sounds more like reflux & trapped wind than the formula itself.
She has proven to you that she'll take Nutramigen on it's own (even if she hasn't quite comes to terms with the taste of it yet, she'll drink it if she's thirsty/hungry enough which is good).

The wanting to be upright and leg raising was classic reflux & wind with my little boy.
Keep them upright after a feed/meal - on your lap (no bouncing!), highchair/bumbo type seat or car seat perhaps. Have toys they can play with that will keep them sitting quietly if needed.
You can help the wind that is trapped below the stomach by "cycling" their legs (it does involve laying them down, so not too soon after a feed!). I found this helped the bubbles to move along his gut towards his backside, then obviously he'd trump! but at least it was out!

I've had one thought on her other meds. If they are a liquid it wont apply, but tablets might well be coated that often also contains lactose, which kinda defeats the object if they are milk intolerant! Doctors sometimes don't realise all the ingredients in what they prescribe, only what it is for treating.

Thankfully I never needed to try 'flavouring' nutramigen with my LO, but you could try a drop of vanilla essence in the feed, or some cocoa powder (check the label first, some do have milk, others don't). As a last resort, my HV suggested the Crusha milkshake flavouring; but as this would be super sweet, you'd be rotting her little teeth every feed!

Start keeping a diary of what you feed and her reactions, see if there is a pattern to it. This will help the Paeds in January too.
Ask for a referral to a dietician too in Jan, as they can help when it comes to weaning and challenging allergies at a later date.

As littleweed says, you're doing all the right things, just keep going - with a smile on your face when you're feeding! Smile If she sees you cringing at the smell, she wont want to take any of it, just smile and stay calm, she'll get the hang of it in the end.

girlsyearapart · 05/12/2010 06:43

My dds 2 and 3 both had/ have nutramigen aa. It is revolting to taste- dd1 took a sip out of dd2 s bottle and burst into tears!
Dd2 started on it at 7 mo and luckily was fine, apparently the taste buds start to change at 7ish mo so if it's before then you should be ok.
We did let her have some with a bit of strawberry nesquik in when she was a bit older as she was going off having milk altogether.
Good luck- I think it does sound more like reflux have you tried dr browns bottles and infant gaviscon?

Lplateson · 06/12/2010 14:16

Thanks hwhite6 & girlsyearapart.

I really don't want to go down the route of flavouring her feed if I can help it but thanks for the options if absolutely necessary I may try them. As I have been somewhat over anxious since she was born I have been keeping a daily diary of what she eats, reactions, how often she poos and sleeps which came in handy when it first all kicked off & she ended up in hospital aged 4 weeks. There doesn't appear to be much pattern at the moment save there are the occasional good days but mostly bad! My Hv's haven't been much use - I phoned them for some advice today as she has taken less than 300 ml so far today and got nothing!
I do think reflux & trapped wind are the problems and I have treid loads of things including the dr brown bottles & been doing lots of stomach massage & cycling of her legs: it does help sometimes but not always. I don't think her dose of omaprazole is high enough based on what I have read so I am going to check whether it should be higher with the doc. I will definitely ask abt a referral to a dietician as I do think I may need to explore early weaning as if she isn't taking much milk I think it may help ensure she is taking enough on board.

OP posts:
girlsyearapart · 06/12/2010 14:46

Can't find anywhere that says her age but given what you refer to she must be under 6 months, in that case I wouldn't flavour it either as it probably isn't the flavour causing the problem.
My dd2 was probably about one and a half when she used to have it with nesquik

scamparoox2 · 12/12/2010 22:57

This sounds exacty like my youngest son, we were sent to the rapid access clinic at the hospital after he was tried with pepti junior then neocate then finally onto nutramigen aa. He was screaming while feeding, i could hear his stomach going crazy and he was sick upwards of 40times a day. We were then referred to the newcastle specialist who informed me that it will take a minimum of 6 weeks for his guts to 'heal' and told me to think of it like an eczema in the gut that needs to heal itself. My son showed a slow difference in around two weeks, less vomit and feeding better, no growling and screaming! and now loves his nutramagen. i did have to make his milk really warm to begin with though to disguise taste a bit! He can now also stomach neocate which his 3 yrs old brother has to drink and loves.
Try not to flavour if you can, i only do it to my eldest as a treat and he's never questioned the taste.
How long has it been since you stopped the pepti? also be cautious of the medication, they gave it to us but i read it was not suitable for children under two? within 2 months we didn't even need it as the vomiting had basically stopped

OkieCokie · 13/12/2010 21:02

Nutramigen is vile. There are still some animal proteins in it so your LO could still have some reaction to it. My LO was sick after it so we were givem Neocate which is an amino acid based formula and it is broken down into it's simplest form so easier for them to digest. I would ask for Neocate.

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