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Cows Milk Allergy- Baby

21 replies

mrsjkerry · 24/02/2018 21:58

Hi

I am looking for some advice really from anybody whose child has been diagnosed with CMPA. I'd like to know if my baby's symptoms are at all similar to yours...

At around 6 weeks my baby started to scream while feeding and refused to eat. We were told it was reflux and were prescribed gaviscon and it did nothing. We were then prescribed ranitidine about a month ago which seemed to help for a few days. I've been back every week since as Baby refuses to feed and they merely increase the dose every time. Although the screaming is less often, it still occurs if you offer her milk sometimes, and she still refuses feeds first time occasionally even though she is hungry.

We have good days and bad days. Currently She has been screaming for the last hour, will not drink milk and is only accepting water. She is a very cranky baby who never seems able to settle. She goes to sleep crying and wakes up crying. It's heartbreaking.

What should I do? I can't get an appointment with the GP until Monday. I don't want to go to the hospital as I have been there 3 times already in the last month. I'm aware you can buy Aptamil lactose free - will this work for a cows milk allergy??

Please somebody out there help me! I'm at my wits end.

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notsureifimbeingur · 24/02/2018 22:09

Hello, I have found this Facebook group to be very helpful...
CMPA- Main group

Ask to join and then perhaps copy and paste your above post, there might be more answers for you?

My little girl is breastfed, and had reflux and was on gaviscon too. I am now on a strict diet of no dairy, and she is 95% better, the 5% of screaming being when I slip up and have some chocolate!Blush

The doctor made me try aptimil Pepti first (where the milk proteins are slightly broken down)- didn’t help. Then I had to try Nutramigen (proteins broken down further)-no different. Finally I am on Neocate- wow, wonderful stuff. She takes it and straight off to sleep, no reflux/gaviscon needed at all.

I knew she would be CMPA (cows milk protein allergy) as both myself and my husband are, but the doctor wouldn’t listen.

What I am telling you all this waffle for (sorry!) is to prepare you for the fact the doctor might make you try all those other milks first as they are cheaper than Neocate (£38 for a small tin) but you’ve got to keep going back and asking for something different if it’s not right for your wee one.

Hope this has been helpful and that you get the help you need. Best wishes

Whydididothatfuckingthing · 24/02/2018 22:17

Cows milk allergy symptoms are very similar to silent reflux, in fact it can cause reflux. My lo was really bad and actually ended up with a feeding tube long term as refusal got that serious.
What are her stools like? Is she particularly windy down below?
Ranitidine made my lo worse as did omeprozole and lanzoprozol.
Lactose free formula still contain cows milk protein and will only help if she’s lactose intolerant rather than milk intolerant (it turns out mine was actually lactose intolerant) it may be worth trying?
Whatever is the problem she needs to be seen, she is not tolerating what she is having and the ranitidine isn’t helping ( it won’t if the problem is an intolerance).
How much milk is she taking a day? Is she gaining weight? I would be tempted to be get her seen before Monday you might be, I certainly was be seen as a neurotic mother. Request to try a formula designed for milk intolerance, or cut dairy out completely if breastfeeding.
Good luck, it is heartbreaking. If she’s refusing tonight can you contact 111 and request an appointment with out of hours.
All the bes5 I know how hard this is, any questions let me know

notsureifimbeingur · 24/02/2018 22:18

In terms of an instant fix for your wee one just now as you say she isn’t feeding, I also had bought and almost tried in desperation Wysoy, which is a soya milk based formula, available to buy in Tesco.

However, I didn’t try it for a number of reasons...

  1. the doctor prescribed the first formula I mentioned above, and we wanted to try that first.
  2. I researched online and Wysoy isn’t recommended under 6 months of age
  3. some babies who have a CMPA are also allergic to Soya.

    But if the doctor hadn’t given us Neocate, I would have tried it the very next day.
mrsjkerry · 24/02/2018 22:23

Thank you everyone for the responses. She has now screamed herself to sleep...so I will leave her to rest as she slept only 3 hours last night in total.

You can buy neocate online. I wonder if I buy this and she takes to it whether the GP would prescribe it straight away rather than going through all the options...

She takes about half of what she needs daily most of it is snuck in while she's sleeping/before she realises!

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mrsjkerry · 24/02/2018 22:24

@notsureifimbeingur how long did it take to see a difference in your baby after starting neocate?

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Owletterocks · 24/02/2018 22:25

Op, I would just ask the doctor if you could trial nutramigen. I wouldn’t bother with lactose free, lactose intolerance in babies is very rare and it’s unlikely to help. Have you ever tried comfort formula? That is partially hydrolysed so sits between normal formula and nutramigen

OkyDoke · 24/02/2018 22:28

I used wysoy for a weekend until I could get the milk I needed. It was worth it.

Chocarocker · 24/02/2018 22:34

This sounds just like me and my little girl 2 years ago. At 5 weeks old started screaming while feeding and refusing feeds. Ended up in hospital overnight a couple of times and tried ranitidine and then omeprazole and pepti 1 milk and finally omeprazole plus Neocate milk which finally seemed to improve things massively. It was the most stressful time as I was so worried about her refusing feeds and it left her with behavioural feeding issues which have mainly improved over time though.

notsureifimbeingur · 24/02/2018 22:34

It was instant for us, the very first bottle. My husband and I just looked at each other and said ‘ So this is what bottle feeding is supposed to be like!’ As she took it, winded gently and then drifted off to sleep!

notsureifimbeingur · 24/02/2018 22:37

It would be very expensive though to buy? I would possibly try Wysoy to tide you over until you can get the doctor, it’ll be much cheaper? Have you any reason to think your wee one might be allergic to Soya too, if that is so, maybe don’t try Wysoy then.

I don’t suppose you live near me, and I could lend you some to try? I’m near Aberdeen, Scotland.

minxthemanx · 24/02/2018 22:40

Neocate here too. Worked a treat, quickly. And I started him on gentle solids way before the age you're told to, to fill him up. Never looked back, had been screaming for weeks and shooting poo up the walls. BTW he had grown out of milk allergy by a year old and has eaten normal diet/tough as old boots ever since. He's 11 now! Hang on in there, get neocate.

Owletterocks · 24/02/2018 22:45

To be honest, I don’t think your dr will start your baby on neocate. The guidelines are to start with an extensively hydrolysed formula such as nutramigen unless severe symptoms such as blood in stool etc. Most babies with milk allergy will settle on nutramigen. I would ask your GP if you could trial it to see if her symptoms settle. Good luck

mrsjkerry · 24/02/2018 22:50

@notsureifimbeingur that's such a kind offer but we are in London!

We are on comfort milk and it helps a TINY bit I think. She still refuses it some days though. And her poo always always requires a change of clothes. We have managed to get 500ml into her last 24 hours...but I guess anyone who's familiar with this stuff knows you resort to all sorts of crazy tactics to get them to take it. My husbands latest one is doing it in the dark so she doesn't see the bottle coming 😩

Last time we were at the hospital the doctor said that 500ml is the bare minimum not to have her admitted for malnutrition and dehydration so we are JUST managing. But feeding is not a pleasant experience

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FrostiesMum · 24/02/2018 22:50

My DS has CMPA. It took 5 months to get him diagnosed. In that time he had:
Loose nappies
Constipation
Gas - lots of farting
Pulling legs up to chest
Wouldn’t feed
Eczema
Cried constantly - hours at a time, full screaming, red in the face, real tears
Couldn’t sleep - 20 mins at a time
These are classic signs. Please, please, I know it’s tempting to take a short cut but please work up to neocate. We were able to stay with Nutramigen. The less adapted you need to go the better and if you’re in the system properly you should, eventually, see a dietician which is so helpful later for weaning / calcium intake / nutritional balance, especially as a PP has pointed out if they can’t tolerate dairy then soya is also likely to be a problem.
If they can’t settle tonight call 111. See the out of hours GP. I know it’s painful but it’s a step forward. You’ll get there.

Owletterocks · 24/02/2018 23:02

Op, if she has settled a little bit on comfort I would definitely exclude a cows milk protein allergy. I think you can buy aptamil pepti over the counter in a pharmacy. Aptamil pepti is an extensively hydrolysed formula it just contains lactose where nutramigen doesn’t

DreamingofSunshine · 25/02/2018 06:08

You can buy nutramigen at the pharmacy, I bought mine in Tesco pharmacy in London for about £15/16 a tin. Could be an option?

My DS ended up on neocate and the change was instant.

QueenofmyPrinces · 25/02/2018 08:13

My breast fed babies was started on Ranitidine at 4 weeks of age due to suspected reflux. His symptoms were excessive screaming and refusal to feed. It made some difference but after 4 weeks I went back to the GP because symptoms were returning. He seemed in pain again and was constantly squirming at the breast.

The GP said that due to my babies symptoms and the fact he had bad dry and flaky skin it was likely he was CMPA and I was told to go dairy free.

My sons feeding habits improved after about 5 days and within a few weeks his skin was much better.

I was given some Nutramigen to try but my son absolutely refused to take it, he wouldn’t even accept a bottle.

He’s just over 6 months old and I’m still dairy free. We have started weaning and it’s a nightmare as he’s showing signs of other allergies too.

mrsjkerry · 26/02/2018 13:52

Thank you all for the advice. We saw the GP today who agrees with me that it could me CMPA. Her eczema has flared up even more over the weekend and is now presenting on her back.

However they never prescribe any milk without first getting the baby tested. This irritates me as I know the test can come back negative due to the different types of reactions. It can also take 2/3 weeks to get this test done.

I have a baby here who is only accepting water today, and will only drink milk at night when she's half asleep. They don't seem too concerned I guess because she does accept some food and is still gaining weight.

Been sent home from the GPs with more ranitidine and some cream for the eczema 😏

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Owletterocks · 26/02/2018 17:25

Op I am afraid you have been ill advised. The only way to diagnose a delayed cows milk protein allergy (which is by far the more common allergy) is to follow an elimination diet and then reintroduce cows milk 4-6 weeks later. If symptoms return cmpa is confirmed. Allergy tests will only identify an ige mediated allergy and it doesn’t sound like that is what your daughter has. Can you request a referral to paediatrics?

FartnissEverbeans · 26/02/2018 18:14

Aptamil Pepti Junior is for cmpa I think.

mrsjkerry · 26/02/2018 20:37

I know @Owletterocks. I guess the only thing to do is wait for the referral letter to come through...so fed up.

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