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Allergies and intolerances

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Original poster

Alternatives to Nutramigen?

36 replies

Tex111 · 18/04/2006 20:24

DD (5 months) has a cows milk allergy or intolerance (still waiting for tests) and was put on soy formula. She now has a problem with the soya and vomits up her feeds and gets a terrible upset tummy. We've been prescribed Nutramigen but she hates it. I've tried half a dozen times and have gotten maybe two ounces in her in total. Must admit, I can't blame her. I tasted it myself and it's disgusting.

We're seeing the GP tomorrow and I'd like to go prepared. I've been reading about Neocate on different threads. What about SMA LF? Anyone used it? Are there any other formulas I should be aware of?

OP posts:
7up · 18/04/2006 20:36

she might be intolerant to it as well, my ds went through nutramigen and neocate and both gave him severe stomach ache/wind. hes been on water only since 5months old. you could try mixing it with milkshake powder to take the taste away. health visitors dont agree with doing it but the paed told me to do it until we realised he just couldnt tolerate it anyway. good luck

Original poster
Tex111 · 18/04/2006 22:49

7up, do you have to supplement with something if you're just giving water? I did a little test and just gave DD dilute juice and her usual purees for a day to see if it was the soya upsetting her. It definitely was. She did want to eat more often without the milk though and do they get enough fat, etc with just water? I'd be really interested to hear more about your experience as I have a feeling we might end up doing the same thing.

OP posts:
7up · 19/04/2006 08:11

hiya tex111, my ds has a calcium/vitamin supplement 15mgs a day, the first one they gave him he came out in hives.now on paediatric seravit, you have to disguise it in food or drink coz it smells rank!

it took some convincing to get it through to the docs and especially the dietician, her attitude was that he couldnt be allergic or intolerant because the neocate and nutramigen have so many things removed from them.

you know your own child dont you, and i was living with a baby who on a couple of occasions at your ones age screamed almost nonstop for up to 20 hours at a time, alternating between constipation and diarrohea.

the problem i have now is that because the rast tests came back negative the paed (who is lovely by the way)is saying that its not food allergy. i know that because he doesnt come out in rashes or anything. he also said he cant see its food intolerance which is really frustrating because i know its food related. you def have to live with it to see the changes in your child. anyway he agrees that their is a problem and has referred ds to a paediatric allergist at pembury hospital.

ive always wondered if it is linked to irritable bowel syndrome to be honest but we'll see what happens with this different doc. made me laugh really being told that its not allergies or intolerances then being referred to an allergy specialist!!?? good luck today, let us know how it goes.

catesmum · 19/04/2006 13:28

my little girl has been on Pepti for the past several months and she drinks it straight (without milkshake syrup). Our dietician said that babies tolerate it much easier than the others

Original poster
Tex111 · 19/04/2006 16:35

7Up, thanls for the info. It does give me hope that we can survive without any milk if necessary.

Catesmum, I hadn't heard of Pepti but have added it to my list.

Saw the GP today and was prescribed Pregestigin (sp?). The chemist didn't have it in stock so I've got to go pick it up tomorrow. GP also suggested I try a different brand of soya formula so I'll give it go. I really don't hold out much hope though.

7Up, I tried your tip last night and mixed some milkshake powder into the nutramigin. DD took 3oz which is a record! She then went on to have a very restless night though, tossing & turning, pullin gup her legs and arching her back. Which makes me think it might be the milk protein rather than the lactose that's a problem. Or maybe both.

Apparently the pregestigin is lactose and milk protein-free. Fingers crossed!

OP posts:
naswm · 19/04/2006 16:41

v unusual to be intolerant to nutramigen.

It took my DS2 a long while to get used to it. at least a month of breaking him in and mixing with his previouos stuff ie 6 ounce old stuff, 1 ounce nutramigen for few days then 5 ounce to 2 ounces etc and gradually increase until 7 ounce nutramagin. She will get there if you perciviere slowly. My DS2 wont give it up now!

I'l talk to you more when I get back on here. Off to do tea. DS2 is 22 months now and it sounds like your poor DD might be going through a similar thing to him. Good luck and hang in there.

matnanplus · 19/04/2006 16:42

I have used SMA LF with a lactose intolerant baby and he thrived ad went back to feeding well and regularly, no more tummy ache or bad nappies.

He was prescribed it by GP.

matnanplus · 19/04/2006 16:47

Naswm, my mates baby was allergic to nutramigen and food in general and aftermany tests and hospital admissions and failure to thrive, they found she is intolerent to 'natural sugars', that are in everything so she has had a very tough time in the last 22 months.

PeachyClair · 19/04/2006 16:48

DS3 has a lactose intolerance, he was also failing to thrive when it was dx's. hew has since (for almost 2 years) used Enfamil Lactofree which we get on prescription and it's fab- he loves it, and so do I (I'm lactose intol too). it tastes like creamy milk and -imporatantly- smells good too. he is also back within a normal (albeit small) weight range.

Would recommend whole heartedly

PeachyClair · 19/04/2006 16:49

Oh and if you can avoid the sot I'd suggest you do- there wasn't an alternative when my eldest was a baby, but he now has metal teeth in place as a result of tooth rot caused by the sugars, the same thing happened to my cousin.

PeachyClair · 19/04/2006 16:49

sorry soys, not sot Blush

7up · 19/04/2006 17:16

hi tex, glad youve got lots of answers on here. sorry your poor dd and you had a bad night, my ds had the same symptoms, absolutely heartbreaking. i stopped giving him the formula myself and then informed the doctors that there was no way i was going to continue and my health visitor was very good and kept ringing the hospital to sort it out. dont give it to her if you feel she is in pain with it, i felt like i was putting my ds through a torture ritual everytime i got a couple of ounces in himSad

7up · 19/04/2006 17:18

matnanplus, what test did your friends dd have to find she was intolerant to the natural sugars?thats really unusual isnt it, is she ok now or really tiny

naswm · 19/04/2006 20:06

sorry to hear that things have been so tough for so many people. Re your friend Matnanplus, I wasn't meaning to be blase, but our Gastro specialist told us that few children are stricly allergic to it. How awful to be one of the few that are.

manitz · 19/04/2006 20:32

my oldest is still on nutramigen. we started her (a bit yonger than yours) at 4 montsh and had chocolate nesquick added at first. I stopped adding it one day and it was fine. it's for milk protein allergies and lactose but my younger dd was on neocate for some time as they told me this hospital preferred it now as it's more easy to digest. I'm surprised your gp recommeded soy, i was told to avoid it as soy protein and milk protein are v similar.

she wasn't allergic to milk protein but had failure to thrive at the same time as her sister had had so as there was no explanation we went with milk allergy and bulked her up. shes now bakc on regular milk.

t6he younger one constantly writhed around at about 5 montsh, had a lot of wind and colicy behaviour. eventually they decided she had reflux (i'd ruled it out as there was no vomiting but apparently now they dont have to vomit but sometimes just chew like cows).

manitz · 19/04/2006 20:32

my oldest is still on nutramigen. we started her (a bit yonger than yours) at 4 montsh and had chocolate nesquick added at first. I stopped adding it one day and it was fine. it's for milk protein allergies and lactose but my younger dd was on neocate for some time as they told me this hospital preferred it now as it's more easy to digest. I'm surprised your gp recommeded soy, i was told to avoid it as soy protein and milk protein are v similar.

she wasn't allergic to milk protein but had failure to thrive at the same time as her sister had had so as there was no explanation we went with milk allergy and bulked her up. shes now bakc on regular milk.

t6he younger one constantly writhed around at about 5 montsh, had a lot of wind and colicy behaviour. eventually they decided she had reflux (i'd ruled it out as there was no vomiting but apparently now they dont have to vomit but sometimes just chew like cows).

manitz · 19/04/2006 20:33

sorry computer fault

matnanplus · 19/04/2006 20:36

hi naswm, it's ok, i too had beieved nutram was a fool proof formula.

7up, ye gods the list, the main ones were bloods, allergy screenings, bariums tummy and bowel and camera look sees again both ends, biopsies, local hospital and GOS, yes she is barely on the chart and would for many weeks not gain a gram, she is a very bright little girl and food is still a problem, she at one point before dx was on 6 different meds. And like many was a poor sleeper and very unhappy, but now is a real heart stealer.

7up · 19/04/2006 20:50

matnanplus, poor little girl. my ds is gaining gradually, 1step forward, 2steps back, cant wait till he hits 22lb at the moment. a little goal of mineSmile

Original poster
Tex111 · 20/04/2006 10:35

Interesting what you're all saying about soy. I actually asked for the Nutramigin because I had heard bad things about the soya. Very worried about the tooth rot as DD uses a dummy and spits up a lot.

The GP says that Neocate is so expensive that they're advised to try everything else first so I'll pick up the Pregestimil today and see how we get on.

Naswm, thanks for the tip about mixing the soya and Nutramigin. I'll try that if the Pregest doesn't work out.

Matnanplus, I really feel for your friend. DD eats purees well and we're really lucky that she's been thriving but I still get stressed and upset over the milk problems. I can't imagine how hard it must be for your friend. So the Nutram doens't have milk protein? My GP seemed to think that it does. I'll be so glad to see someone who specialises in this stuff. The GP is great but it's obviously not her field.

OP posts:
CADS · 20/04/2006 13:55

Hi Tex

My dd is (5mnths) has the same problem as yours. We were adviced by 3 paeds, that soya formula is not nutritional enough for babies under 6mnths and they prescribed Nutramigen which she reacted to imediately so I pushed for Neocate. Nutramigen has hydrolysed casein and so is cow's milk based. I'm sure Presgestmil is the same that is why I insisted on the Neocate. Neocate tastes better but it took a little while to get dd use to it. Personally, I would push for Neocate if she is reacting on the nutramigen and soya.

Good luck

matnanplus · 20/04/2006 19:34

Yes it is a worry for them, even now at almost 2yo she is still on 4 daily meds, with her it is natural sugar not milk that is the issue and sadly there is just no way of removing them completely from the diet.

matnanplus · 20/04/2006 19:35

\naturally occuring sugars in food\

manitz · 20/04/2006 21:08

Nutramigen has broken down milk or proteins (I think rather attractively called pre digested)so they're easier to digest than in normal formula or milk and therefore ok for those allergic to milk protein.

Neocate I thought was the same but even more broken down, they tested dd2 for cystic fibrosis and said even if she had it (thankfully didn't) she'd have put on weight cos even with such a severe digestive disease it was sooo broken down it could be digested. I would push for it and ignore a gp, its worth a try if you haven't already. I've had several paeds and dieticians as moved house recently and now have new hospital and they've all concurred on this. a letter from the hospital gets anything you like afaik.

matnanplus and 7up how old are your kids? a quick look and I coulnd't see. Mine are 3 and 1 so if yours are younger I can let you know what we did one was off chart for a while, if you like? just sounds like yours are at weaning stage.

7up · 20/04/2006 21:11

hi manitz, my ds is 18months old