Those with experience of cow’s milk protein allergy... please help 😞

[VillageFete]

Hi,

My son was diagnosed with CMPA at 7 weeks old after having excessive wind from his bottom since birth, what appeared to be digestive discomfort, a stuffy nose, and then from 6 weeks old very frequent, very loose, mucusy nappies. He’s never had eczema, no rashes, no vomiting.
He was put on Nutramigen 11 days ago and Ranatidine 2 days ago (Showing silent reflux symptoms)
The Nutramigen stopped the loose, mucusy nappies within 24 hours and also the excess wind. Up to now, his nappies are still normal but at night he passes lots of wind and throughout the day he often seems very ratty and unsettled. He won’t let you put him down and sometimes he will just scream uncontrollably.

I feel terrible saying this but he has got my anxiety through the roof. I feel like i’m scared of him. I have a 9 year old and she finds it a very stressful household now and wants to constantly stay out and get away from us I cannot enjoy him at all and I waited years and years for him (Secondary infertility) I feel so sad most of the time.

How much longer do I give the Nutramigen before I will know if it’s the milk for him? Does it take time to work? I’m not sure how i’m supposed to know if it’s the right milk for him, because his nappies are ok but he’s very unsettled and a real crier and he does seem windy again. We have infacol and Dr Brown bottles but they don’t appear to be helping.

What do I do? I can’t see light at the end of the tunnel here. We have been referred to a dietician but still awaiting an appt. A friend of a friend has her little one on SMA Alfamino and has offered me an unopened tub to try him on but i’m not sure if I need to give the Nutramigen more of a chance?

Is there any hope that he could start the milk ladder around 8/9 months so that we can try and get this problem resolved and see just how “allergic” he is to CMP?

I feel so lost and sad today

We had great success with Neocate. Not sure in the differences.

Hang on in there. I had one the same. We both spent most of the first 6 months crying but I found as soon as she could sit up and was more mobile she was so much happier and the milk helped so much.

@100percentplease Nutramigen still has some CMP in but it’s broken down. Neocate/Alfamino/Puramino has none in but GP won’t prescribe these unless Nutramigen hasn’t helped within 4 weeks.

Has your little one started the milk ladder?

I'd go back now and ask for neonate

It's not fair that they make a small baby be unsettled for 4 weeks, you might have to push for it

If they refuse I'd ask for a second opinion and a paeds referral

She’s nearly 7 now and eats everything! I’m sorry I can’t even really remember back to milk ladder days it was so long ago. She’s absolutely fine now, no sign of any allergies.

Get yourself and LO back to GP or even buy a tin of neocate just to see how you go.

Is a private paed appointment an option for you?

We did this with dd when the gp said a nhs one was about 6 weeks

Ours was £180 for the appointment and got a. Private prescription for neonate which was about £45 for about 5 days supply

Our paed rang my gp who then agreed to prescribe it until our nhs appointment came through then we had it until dd was 2.5yrs

Go back for Neocate/alfamino/puramino- they are fully removed of any Protein which nutramigen still contains albeit in a different way. Neither of mine could handle nutramigen

If you have a paediatrician or allergist rather than just GP ring them and ask them to prescribe it . If they won't do it, ask to be referred to an allergist to ring you. Unfortunately due to the costs it's usually she who shouts loudest gets heard.

Thank you so much for taking the time to reply.

I am a nervous wreck! I’m desperate to make him better. He just doesn’t seem right to me. Sometimes he’s smiling away and settled but it’s truly only short lived. He has smeezed lots today too and i’m thinking that’s allergy related? He’s always been sneezy but it’s been about 7 times today.

My GP was very understanding and promised we’d get him sorted, but she did want to try him on this for 4 weeks but I truly will have a breakdown if he stays so unsettled. I feel so helpless. He often fusses and pushes bottles away and doesn’t always complete feeds.

Does the fact he possibly can’t tolerate hydrolysed cow’s milk mean that this is a severe allergy that he may not outgrow?

No, not at all. My girl was very severe and also allergic to wheat and egg. She couldn't handle the milk ladder until 4 years old and took and year to complete it. She's 5.5 and gets loose stools from ice cream and pure milk and hiccups but can handle UHT and everything else fine. She was on Alfamino until 3.5. My boy is 3, he was also severe, but completed the ladder over 10
Months and is now fine x

Thanks @Kanga83 for your reply.

He always sounds quite wheezy too. Is this a symptom that’s common? My GP wasn’t concerned about it but I am. I’m just so down and don’t know what else to do besides see my GP in say another week or try and get a private Paed appt - but not so sure what they could do?

I can't help as I breastfed my DD to 1 and it was only at this point that she started with problems. It was a horrible time and she would frequently scream all night, all day and was often sick. We took her to the GP and hospital repeatedly, desperately seeking advice as we had no idea what was wrong. Our childminder said she couldn't carry on as she was distressing the other children so much.
It took us a long time to get help but it does get better. She is now 3 and can tolerate dairy again. I promise it gets better, but I know how you feel.

Go back for Neocate. Nitramigen helped DD but she was still unsettled. She was a different baby once she started Neocate.

She had outgrown CMPA by 2

Can you buy a tin of Neocate in the meantime if you are really worried? Be warned it is £££. Our local pharmacy sold us some when I told them a white lie that our prescription had been messed up

Go back for neocate or alfamino. Where in the UK are you? We had to go down the private route for my girl as her paediatrician was an utter incompetent arse. We paid to see Dr Neil shah, who devised the milk ladder. He examined her all over, took her history and prescribed alfamino there and then. He works privately at the Portland with a guy based in Sheffield.

I’ve just emailed somewhere local that offers a private Paediatric service - it’s very expensive at £500 including an allergy blood test. I’m hoping they’ll see him, even though he’s only 9 weeks old. I desperately want to know if this is an Ige allergy or non Ige. He has a slight wheeze and sneezes a lot but all other symptoms are gastro related.

I am a mess tonight. I’m so worried. I can’t eat or sleep. I know this may seem like a major overreaction on my part but I’ve had such a terrible 5 years with IVF/fertility treatment, miscarriage, death of my baby God daughter, death of my Auntie who was like my mum and also the death of my best friend in December. I nursed my Aunt and best friend until the end and have had anxiety since. I just feel like there’s always something to worry about and now i’m so scared for my precious miracle baby’s health.

We paid in 2014 £250 to see Neil shah then £190 for a follow up. Blood tests won't show much, it's skin pricks you need, they will show all allergens. My girl was non IGE dairy, IGE egg based on reactions.

Gastric tends to indicate non/IGE, my girl has a runny nose for a good while. It's also hayfever season so don't rule that out either, if your susceptible to allergens that includes tree and pollen. I'm sorry you've had such a hard time recently, I hope you manage some sleep xx

Thanks @Kanga83 I’m struggling to find somewhere local that will do the skin prick test.

I’m starting to worry that this is an IgE allergy because of the wheezing and sneezing. I just don’t know.

This is it, plus £250 to see the Consultant

I sympathise. Without being too specific where are you based?
We took our son to a private dietician who agreed he needed Neocate. The GP was happy with the recommendation and prescribed it. Nutramigen seemed like a miracle for two weeks and then we were back to square one again. Neocate helped his digestive issues but not the reflux.

He’s 3 now, and we’re still completely dairy free as is unable to tolerate the milk ladder at all

@Daffydillo I’m in the North West. I’ve been referred to a dietician but waiting for an appt to come through. I’m sorry to hear your son can’t tolerate any dairy. I can imagine it’s been a stressful road. Can I ask what him symptoms were?

Before you go paying a fortune for private appointments, go and speak to your gp and explain everything and see what they say. The reason they wait before prescribing neocate is because it can take up to that time for all of the effects from a previous milk to completely leave the system.

The behaviour you describe sounds a lot like reflux so I'd recommend maximising treatment for that first. The dose of ranitidine can go up to 3mg per kg but they normally start lower so maybe speak to the gp about that? They could also add in omeprazole. Neocate isn't necessarily a magic fix unfortunately.

Hows his weight gain? If he's gaining weight, although it's incredibly hard, remember that it will be ok. Babies grow out of reflux, although it doesn't make this stage easier. Definitely speak to your gp and tell them your worries and how you feel. Maybe ask about a referral to paeds? But you dound like you've been through a really tough time and maybe need some help and support for yourself too, does your gp know how anxious you've been feeling? Hope things improve soon OP.

The ranitidine will take longer than that to work. DD was actually on omeprazole which really helped but it took a good 2 or 3 weeks to build up. Hang on in there OP, it's really tough but it gets better.

We started the milk ladder at 10 months and she didn't have any issues apart from yoghurt (we stopped for a few weeks then tried again) and milk itself which she still doesn't really like but has no reaction to any more.

Horrendous foul smelling wind, mucus nappies, blood at times, we had to burp him every ounce. He was continually sick during and in between feeds plus usual reflux stuff back arching, screaming. It was horrible to watch. He had dry skin but not horribly.

My GP wouldn’t prescribe Neocate without a paediatrician/dietician recommendation for which had a 9 month waiting list. I was too desperate to wait so went privately. Ultimately it was a combination of Neocate, omeprazole, domperidone and gripe water that eventually allowed poor DS to be pain free

Thank you everybody. Your info and support is invaluable at the minute.

@IwillrunIwillfly Yes, she’s aware. She has been lovely, especially throughout my pregnancy when I was an anxious mess. I was living part time in a hospice with my best friend, it was awful and she was a decent support to me.

@peachgreen Can I ask what your little one’s symptoms were? Will it be the dietician that decides when we start the milk ladder?