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Anyone had a child on Nutramigen formula? Is this normal?

(35 Posts)
SmileCheese Thu 30-Jan-20 13:01:33

So DS is being investigated for a suspected CMPA and has been given Nutramigen formula but every time he has a bottle he promptly throws most if not all of it back up when being winded.

He was initially throwing up cow and gate formula which is one of the reasons they suspect the allergy but he's been much more sick since switching over on to Nutramigen on Tuesday to the extent he's having fewer wet napies as he's obviously not digesting as much milk.

I just want to know if this normal as the GP said most babies don't really like the taste and to persevere for a while on it, I felt a bit fobbed off when I rang to query it to be honest and he gave no indication of roughly how long I should be persevering for before going back to the GP.

Its worrying me that he seems more sick on this formula when in theory it should be making him better. Please tell me it's normal an others found their babies reacted in the same way.

OP’s posts: |
Selfsettling3 Thu 30-Jan-20 13:03:28

Join the CMPA Facebook group. There are some very people who knowledgeable about alternative formulas. Are you doing paced feeding and winding as you go along?

TooMuchEyeliner Thu 30-Jan-20 13:09:58

This happened to DS. We were told at the hospital that his allergy was too severe to be able to tolerate it. He could only tolerate soya milk. Are you seeing a specialist? We found our GP to be next to useless on the subject of CMPA so just bypassed them every time.

SmileCheese Thu 30-Jan-20 13:10:30

Thanks for the Facebook recommendation I'll be certain to take a look, as we didn't really get any guidance other than to swap the formula.

We are winding 4 or 5 times during each feed but each time he is winded he seems to throw up most of the milk we've just given him.

OP’s posts: |
Soubriquet Thu 30-Jan-20 13:16:27

My ds was on this and it smells awful

It takes a little while for them to get used to the flavour but they will do it

Little and often if you feel they aren’t taking in enough

Queenfreak Thu 30-Jan-20 13:19:08

It still contains caseins from cows milk. He may need neocate

VillageFete Thu 30-Jan-20 13:19:59

Has he been properly assessed for a tongue tie? By an infant feeding nurse or the like? My son was wrongly diagnosed with CMPA and put on Nutramigen, when in fact the symptoms were due to a posterior TT. I did have to go private to get diagnosis and treatment though.

Once it had been snipped, I put him on Hipp Organic and he’s been fine ever since.

SmileCheese Thu 30-Jan-20 13:27:03

He was admitted into hospital for vomiting and diarrhea and it was the team there who suggested his symptoms were indicative of an allergy. Linked also to the constant screaming and hardening of his stomach and rashes on his face he's been getting since birth which our GP suspected was colic.

I have no idea if he could have tongue tie how would I check for this? Also had no idea it still had cows milk in it. That seems pretty daft when they suspect a cows milk allergy so I'll definitely question if he can be given neocate.

OP’s posts: |
Queenfreak Thu 30-Jan-20 13:35:02

It's a very broken down casein. So many children thrive on nutragimen. For some however it's still too much, so a move to neocate or alfamino is needed. They both taste like poop, and parents often have to flavour it for the baby to take (vanilla extract is recommended), so it's not an easy move to make.
Do you use a thickener with the milk? Carobel or something similar? That could also be the answer.
I only know what I've read from other mums as I breastfed and so eliminated dairy and soya from my diet, but the mums on CMPA support are amazing and very knowledgeable.
I found it so distressing and hopeless watching my baby scream day after day. Its horrific. You have my full sympathy xxx

Queenfreak Thu 30-Jan-20 13:37:35

For the tongue tie I would recommend getting a qualified feeding specialist to check if you afford it (we paid £60 3 years ago, SE). She found our daughters when the (very lovely!) Midwives missed it.
She was able to make the referral for us, and we were seen in clinic 6 days later.

GlamGiraffe Thu 30-Jan-20 13:45:20

There is more than one nutramigen formula. I've read the thread, I cant see which one you have. Only one is suitable for CMPA. If you have accidentally been prescribed the wrong one it will he causing the problem. Nutramigen is often prescribed in preference to neocate as many babies find it more palatable if they have been on other formulas first. Noecate has a very different taste and some have a strong aversion, so usually nutramigen is an easier switch.

For CMPA you should have Nutramigen Puramino.

Soubriquet Thu 30-Jan-20 13:58:10

Yeah that’s right

We originally had nutramigen, which then changed to nutrmagien puramino.

I forgot a lot that

Soubriquet Thu 30-Jan-20 13:58:20

About

SmileCheese Thu 30-Jan-20 14:03:22

For CMPA you should have Nutramigen Puramino.

We've been prescribed Nutramigen 1 which I presume is not the correct formula then. So I may as well have stuck with what I was feeding him if it's not going to make any difference.

I found it so distressing and hopeless watching my baby scream day after day. Its horrific. You have my full sympathy

I Thank you for your sympathy, I'm sorry you seem to have had a similar experience. Its so frustrating and I get so upset because all he does is scream and nothing seems to help him, all I want is to make him feel less uncomfortable and for him to be bale to feed without feeling so ill.

OP’s posts: |
GlamGiraffe Thu 30-Jan-20 14:13:03

@SmileCheese
CMPA is not an allergy to cows milk as such, it is an allergy to the structure of the shape of the protein chains in cows milk. These are very similarly shaped to those in soya and other mamalian milks like goat, sheep etc and for this reason many children with severe CMPA cannot have any of these milks.
If you consider a protein chain to resemble a string of beads in a certain colour order, the body recognises this as the offending milk protein and launches an immune response which includes rejecting the offender (the milk) as soon as possible.
Some formulas given for milder digestive problems such as nutramigen Enfamil, nutamigen Lgg, Alfamino, similac alimentum, are extensively hydrolysed formulas which means the cows milk they are made from has its protein chains broken down from their original long bead strings of very long strands to strand which may be like 3 bead lengths. In lots of infants the immune system cant recognise these and the immune system doesnt react. These milks!are often used by lactose intolerant babies. When these milks dont work, often in severe cases of allergy an amnio acid formula would be the last choice. These are things like nutramigen puramino and neocate. In these the protein strings are broken into their single individual bead like components. These come from cows milk but the protein formation is different from cows milk protein in it's original form and because of this the body is incapable of recognising it and reacting to it.
So yes, CMPA suitable milk is made from cows milk😊

The symptoms you have described do sound incredibly like an allergy, the hardened l and tummy the rash are relevant. Are you an allergic family or fo have have tummy or digestive issues?
I'd definitely check you have an amnio acid formula
Good luck.

SmileCheese Thu 30-Jan-20 14:23:51

GlamGiraffe thank you so much for your great response. It would have been so useful if someone had taken any time at all out to explain this to us. It was very much here's a prescription for some formula and off you go.

Are you an allergic family or fo have have tummy or digestive issues?

No allergies or any issues but babies Dad did have a cows milk allergy when he was a baby although the doctors said this wasn't relevant as he grew out of it very quickly.

OP’s posts: |
peachgreen Thu 30-Jan-20 14:26:05

Hmm, it took DD a while to adjust but she just refused it, it didn't make her sick. I would suspect your baby needs one of the more broken down formulas n

icedancerlenny Thu 30-Jan-20 14:28:51

Sorry to hear you are going through this. It sounds like you need Neocate, which is 100% mill free. My daughter had this sane issue and even now at 11 has an anaphylactic milk allergy. Definitely keep going back as we weren’t taken seriously until she had allergy tests at 11 months. I ended up breastfeeding until 18 months but she eventually drank neocate until she was 5. Good luck

icedancerlenny Thu 30-Jan-20 14:30:02

Sorry for my typos!

GlamGiraffe Thu 30-Jan-20 14:39:44

@SmileCheese
The milk you have been given is an EHF, the first type I described and has added good bacteria. Is there any improvement at all on this?

You may need two switch to an amnio acid formula straight away. You need to ask your HP to refer you to your local prescribing dietician urgently if that is the way they work in your area alternatively they need to follow the prescribing guidelines for your local healthcare trust regarding CMPA. There can be reticence to prescribe amnio acid formula as the cost is £45+ per 500g can. You might want to try buying a can if you are able to try it out.
How many wet nappies is baby producing daily now? (I mean wet not a trace of wee). If it nothing really you need to take your baby to hospital. Dehydration is cause for concern in a young baby.

SmileCheese Thu 30-Jan-20 14:44:57

Is there any improvement at all on this?

Other than his poos being slightly less runny I would say he's worse on it and he's even more unsettled because he's throwing up so much. So far today he's not stopped screaming for approx 2 and a half hours.

How many wet nappies is baby producing daily now? (I mean wet not a trace of wee).

About 5 wet and 1 dirty yesterday and so far today he's had 2 and 2 dirty Nappies. I'll keep an eye on him being dehydrated and return to hospital should I feel he's going that way. Thanks again for all the great ad uh, I'll also see if I can get a tin of the other formula you recommend and see if that helps him at all.

OP’s posts: |
GlamGiraffe Thu 30-Jan-20 14:49:16

One other point. Did you just switch formula outright? Or mix the old and new half and half gradually reducing the old and increasing the new in the bottle? This would be a normal approach as even an ill baby would because bit overwhelmed by the shock. If you have any of your old formula I'd mix it half and half for a day or two before switching over fully.
For now possibly try feeding small amounts in frequent amounts so there is less potential to vomit. I'd suggest after two weeks MAXIMUM the milk must be changed if there isnt an improvement. If there are no wet nappies, lethargy, obvious weight loss, etc. Hospital is your first port of call.

GlamGiraffe Thu 30-Jan-20 14:52:40

@SmileCheese
Great if you can get Puramino. You need to ask at a pharmacy. It's usually a special order product unless you have a particularly good pharmacy nearby.
If it stays at 2 wet nappies today that really needs watching.

SmileCheese Thu 30-Jan-20 14:53:47

Did you just switch formula outright?

We were told to switch all bottles to the new formula immediadly as I asked about gradually changing it over.

I'm trying small frequent feeds but so far even if he has just 1 ounce he is throwing up.

OP’s posts: |
mooity Thu 30-Jan-20 14:55:56

How old is your ds?

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