CMPA - How did you get your GP to prescribe Nepcate?

[user666555]

Hello,

Posting on this board for traffic.

So this may be a bit long but quite soon after my DD was born I noticed she was very unsettled, irritable, had an upset stomach, eczema on her forehead, swollen eyes, terrible reflux/vomit, had colic, she had wheezy breathing, was breathing shallow after feeds and along with other symptoms was just uncomfortable.

I saw many professionals who fobbed me off and said I was a new mum and that the above is quite common. They said she'll grow out of it and sent me on my way. I even took her to A&E twice due to concerns with her breathing.

One Saturday evening she had been crying so much and I was so sleep deprived from just the general feeds with the other symptoms and pain she was in on top really making it all so difficult, I decided to call 111 and was put through to an out-of-hours GP who did a questionnaire with me and said my daughter scored a fair amount of points to be prescribed CMPA milk because she had a lot of the symptoms. I collected the milk and was told to trial it for six weeks and then go back to 'normal' milk and see what happens.

Throughout the time that I was trialling the Aptamil Pepti 1 milk with her, she had TERRIBLE reflux. She would arch her back so much after feeds, would cry during feeds, would gag a lot, would have regular hiccups, didn't want to be laid flat, wouldn't nap properly etc. Went to the doctors again a few times, got fibbed off and eventually got prescribed Gaviscon. Gaviscon didn't really do anything so we went back and got prescribed Omeperazole. By the time we got around to getting prescribed that it had been the six week trial. I told the GP that I'd like to start a fresh trial on the Pepti 1 because I want to see how her symptoms are after the reflux is dealt with. The GP agree and prescribed more alongside the Omeperazole and booked in a review. Fast forward, I'm due for her review tomorrow and her symptoms still persist. She still feels discomfort whilst feeding, she still seems uncomfortable and wakes from naps after 15-20 mins. She also cries when being fed and during feeds. She regularly still has an upset stomach and reflux, has awful wind that smells terrible, she still sounds wheezy and more importantly she cries for hours everyday - a high pitched painful cry for the majority of the day. It's really hard for me to do anything such as even have a shower as she doesn't want to nap, constantly wants some sort of movement whether that's being held and bounced/in the pram etc. I've noticed she's also started consuming less formula. She was starting to take 5oz but has now gone down to 2-3oz. Maybe sometimes 4oz. She is still gaining weight because she comfort feeds I think due to the pain but she also refuses milk between the feeds but wants it at the same time? I know that makes no sense but that's what she does.

Anyways, long story short I feel as though she may require Neocate formula. How do I go about getting this? One GP told me that a paediatrician has to prescribe it. She's been referred but it's been weeks and still no appointment. Honestly, it breaks my heart t see her feel so uncomfortable and be in so much pain. I truly believe that's what she needs after trying Pepti 1, Gaviscon and Omeprazole. I believe that the symptoms that the medicines are trying to treat are related to her not being on Neocate and that she may not really even need as much medication if the formula agrees with her more.

How can I explain my view to the GP and get it prescribed without them saying it's 'your first baby - babies are like this, just let them cry it out and grow out of it'. I really need the GP to take this seriously as it's starting to impact my mental health as my baby is so unsettled and unhappy most of the time and I cannot keep up with constantly pushing the pram or rocking her and not having a shower/always ordering food because I can't manage to cook with her being so unsettled etc. I adore my little girl but surely we can't go on like this?

Go back tomorrow. Insist on the neocate. And ask to be referred to the allergy clinic as there’s a wait and you’ll want to know what your baby is allergic to before weaning.

@DownWhichOfLate that's the plan I think. Got the appointment for the allergy clinic and it's for June (she'll be 7 months by then)

Great! But really push for the neocate if you can. It’s exhausting and stressful, I’ve been there. Coffee!

@OdeToBarney thank you for your response. It definitely is such a difficult time. I think doctors aren't that clued up as to how it impacts not just the baby - but the whole family. It's such a heart breaking, tedious process and it takes a lot out of you whilst you're already feeling so tired and vulnerable.

The GP said if I feel like she still needs it in 2-3 weeks time we can have it prescribed, however, I'm going to tell him that I think she needs it regardless. It's the fact that she doesn't have bad skin related symptoms that made me agree to up the Omeperazole dosage and to see how she gets on. But I think regardless she needs AAF.

Her nappies are very full. She has loose stooles I'd say 4/5 times. She has explosive nappies too. 2/5 times it'll go up her back otherwise she'll just be quite noisy and you can tell she's doing an explosive poop.

I did say to the doctor I think the reflux is a symptom of the CMPA and once that's addressed the rest should fall into place but he didn't seem quite as convinced

I do worry that the GP may say I didn't give it the full 2-3 weeks to work? But surely usually the effects of Omeprazole are instant? Or can he argue that it might just take a few weeks to work?

With my first DD they tried every trick in the book not to give me Neocate. It was only when she was diagnosed with failure to thrive along with multiple hospital admissions that the hospital prescribed it for me.
DD2 I recognised the signs and insisted. We had to trial Nutramigen first but when her rash persisted and she was still irritable I knew that she needed Neocate. This time the GP was much more accommodating.
The cost of Neocate is very expensive and therefore they will only prescribe as a last resort.
Perhaps you could buy a couple of tins and keep a diary to see if the symptoms improve and then show your evidence to the GP?
I'm sorry you find yourself in this position. Having a baby with CMPA is very stressful. I hope you are ok

@Countrylife2002 I agree. Defo treating the symptoms and not the cause. What symptoms did your LO have if you don't mind me asking?

With regards to weaning, the advice we had from the allergy clinic Consultant was to introduce all major allergens as early as possible but introduce them one at a time. Unfortunately that was way after we'd done weaning and I'd avoided the major allergens as I was scared! Like you, the time waiting for the first appointment was too long, they should see babies around weaning age much quicker.

Maybe keep a diary of what you introduce and try each allergen a number of days apart.

@PragmaticWench thank you. Really helpful because I've been given no guidance in regards to weaning and the appointment is later so it means she'll have already started weaning.

What age did you wean your LO?

@Daisychainsandglitter yes, I think Neocate is defo the way forward. Was just unsure of the skin side of things but I think it's fair to say that although most children have skin related symptoms, not all do and some still require AAF despite not having many skin related symptoms. I guess I was just blindly trusting the GP's judgement! X

The bad smelling wind is the key, OP. My baby had it too. He was a different baby on neocate.

All the ones you describe, endless screaming, obvious stomach discomfort (she could turn over onto her stomach at 6 weeks as a result of all the twisting and turning). When she had full formula she vomited and pooed all at the same time (immediately) and came out in hives - thankful she was quite so allergic as it was obvious (to me). But I still had to pay for a test to get it done quickly and stop her being in pain.

She was always on the 90th percentile for weight and height , no skin issues .

I mean, that's classic CMPA! Omeprazole isn't going to change that and the GP should know that. I know it sounds like a cliche, but you really have to be a tiger mum. You know your baby, you know this isn't normal, you have to be really very firm with them. In my experience Doctors will try every trick in the book not to prescribe expensive formula or medication. I had a GP outright lie to me to say that he couldn't prescribe omeprazole. It was only because I'd been told by the pharmacy that another patient the same age had it from my GP that I knew it wasn't true. When I told them I knew they could prescribe it, they back down. But I also know how hard this is when you're tired and vulnerable. It's so wrong.

Have you been given liquid omeprazole or the stupid dispersable tablets?

(Edited for typos)

@OdeToBarney we've been given liquid Omeperazole. Yes, I agree. I don't think Omeperazole will fix the issue as Omeperazole is targeting the symptom rather than the cause. It's best to tackle the cause so that it reduces/removes the symptom(s) altogether!

I'm definitely going to see the GP again this week, hopefully get something sorted because I cannot go on like this. I felt like I was going to faint twice today. The lack of sleep/tiredness, mental stress etc is catching up with me. When people say sleep when baby naps I can't because her naps are a maximum of 30 mins. By the time I drift off she's awake and crying. It's such a lonely feeling because most other mums can enjoy more of this stage whereas CMPA mums are just trying to ride through it

Just wanted to add….you might not be prescribed neocate as a AAF….in my area they mainly prescribe Alfamino now …..it’s probably cheaper

From what you say OP it sounds like your baby had classic CMPA. I recognise the symptoms well.
I also understand how isolating it is and how difficult it is when you see other mums with seemingly perfect children when all yours does is scream all day. After my first I could not wait to go back to work!
I really hope it works out for you. I found with both kids that they were 100% better on Neocate within 2 days of transferring onto it. I must warn you though that the taste is not supposed to be pleasant.
Whilst you're in the midst of it it feels like it will never end but honestly mine are 9 and 6 now and it improves so much once they are weaned.
We were told by the children's hospital to wean DD1 as soon as possible as she was losing weight as she was vomiting and pooing out any milk she was taking so we weaned at 16 weeks.
Anyway hang in there and be persistent. I've learnt that GP's in particular tend to fob you off and dismiss you so please do stand your ground!

This really brings back some traumatic memories.

First of all, it really is just awful. It made me really lose trust in the health professionals I saw. My mental health was on the floor and once my DS got better life was so different. I could cry reading your posts honestly.

My DS had symptoms from when he was a couple of days old. I knew it wasn't right. I knew he was in pain. I was horrified at how I was treated and dismissed. I was told it was normal, I was just a first time mum, babies cried etc. I was told to keep waiting until his digestive system matured. Told it was colic. Told I was over feeding him (he was comfort feeding) and I should leave him screaming and not feed him.

Given gaviscon which didn't work. Kept being offered laxatives for him and when I complained that this was addressing the symptom and not the root cause they seemed baffled that I would care.

It's all down to money. If these formulas were cheap they'd hand them out to trial no problem. But they're expensive and amino acid formulas are extremely expensive. It's sad but it means you have to fight so hard. And before anyone says anything, I know that taking dairy away from a baby without an allergy isn't good but neither are daily laxatives. That's why the formula is trialed. If it doesn't work and the symptoms are not from CMPA then no harm done. They've ruled it out and can explore other options.

Anyway I begged for a trial of Nutramigen (similar to pepti - hydrolysed) and finally a GP humoured me. His symptoms got so much better and when I did the milk challenge to "confirm diagnosis" he became extremely unwell.

They agreed after that that he "might" have CMPA and referred him to a paediatrician and dietician and let us have Nutramigen on prescription. Unfortunately after the milk challenge the Nutramigen just never seemed to work properly again. His symptoms weren't as bad but were there and he just didn't seem right.

I got a paediatrician appointment through and asked for Neocate and she was literally in the middle of fobbing me off without listening to me when she saw his weight hadn't increased since the milk challenge and he had plummeted down the centiles. Then she quickly changed her tune and agreed to prescribe it.

She also told me to early wean (terrible idea - did not go well) and gave us Omeprazole.

He thrived after that. Kind of. He reacted to some other foods too but now he is doing much better. He is 15 months and just failed step 1 of the milk ladder. But I am hopeful he will pass eventually. If not I don't care too much. Everyone in our house has various food intolerances, allergies etc.

A few things:

• Ours needed Neocate but had no skin issues. Just to reassure you your GP may be wrong about that. I definitely don't believe 99.9% is accurate.

• I would not immediately dismiss Omeprazole although I'm not saying to ignore the CMPA. Just that lots of people need to use it alongside it. It was an absolute life changer for us. The Neocate solved almost all of his symptoms but his reflux persisted. Probably because Neocate is so very thin.

We tried combining it with gaviscon and using a thickener but he could not tolerate either. We were left having to give it to him as is and his reflux was awful. The omeprazole stopped his reflux being painful (but didn't stop it - he was just a hiccuppy fountain but not in pain) and his reflux only resolved after he turned 1.

• The omeprazole took a few weeks to work and even got worse before it got better. I am so glad I persisted. I cried when he was first able to do tummy time without screaming.

• The Omeprazole did need regularly increasing especially as he gained weight.

• You have done so well to get to a point where your GP has agreed to prescribe Neocate in 2-3 weeks after trying this. I'm not saying you should think yourself lucky. I'm saying you have done so well advocating for your child.

• I am absolutely not dismissing how difficult this is but if there's any way you can get through 2-3 (family help?) weeks and they won't bend on the timeline then it might be worthwhile to persist. Of course if you can't manage and need to go back sooner than it's totally understandable too. I am just saying I wouldn't completely dismiss the Omeprazole. If you're not keen on that you could perhaps explain that you would be happy to try it only if it's needed once your DC is settled on the Neocate.

If after the 2-3 weeks, the symptoms are still there and they won't honour their promise to trial Neocate I would go all guns blazing with NICE guidelines, information from allergy UK, lists of symptoms and how they overlap, notes from the appointment where it was promised etc and if that failed a formal complaint to the practice manager.

I'm so sorry this is happening to you. I feel genuinely traumatised from it all. I still cry sometimes looking at him and remembering it. A lot of people here understand how awful it is. I used to feel jealous of people with normal babies and I even still feel it now when my friends have newborns and take them out to cafes etc and they're just happily sleeping. I feel like that time was robbed from me and if I'd been listened to sooner I'd have been able to enjoy him more.

I really hope things improve for you. You are not alone.

@semicole thank you for your kind response. It really is a lonely feeling. I definitely resonate with what you said about feeling slightly jealous of other mums whose babies were more content. I felt as though I took it a bit personally that there's something wrong with my parenting and that's why my baby is so unsettled. Obviously the logical side of me knows that's not the case and that she has an allergy and I couldn't have prevented that. However, you can't help but feel these feelings.

So ironically she seems a bit more content today (still on the Pepti 1) with the Omeperazole. I'm wondering if the doctor was right or if this is going to be short-lived relief (again). I'll just have to wait and see. If things get bad again I'll order/speak to the GP about a AAF. I've heard some great things about Omeperazole so I do really want it to work for her. But, I don't want it to just mask her symptoms temporarily (which I felt like it was previously doing). I'm not going to give up on the Omeperazole but I'll see how it goes with the Pepti 1 and if I feel like the effects are short-lived then I think she will defo need an AAF.

I can relate, I really want to get this sorted so I can start to enjoy being a mum. I feel like the first three months of her life have been consumed by doctor's appointments and her just crying. I want to start enjoying motherhood more. I've always wanted to be a mum, hopefully I get somewhere and can start to enjoy the journey more x

Also, I was wondering if any of you can help me on another thread I've posted:

TW Baby Poop - Is this baby poop normal? http://www.mumsnet.com/Talk/thirtydayss_only/5016314-tw-baby-poop-is-this-baby-poop-normal

I know I sound like I'm losing my marbles but I want the opinion of someone who has/had a LO one with CMPA. Is the poop normal? I'm trying to work out if the formula is starting to help alongside the Omeperazole as she's been on the higher dose for a few days now.

Would appreciate if anyone would like to go over to that thread and give their opinion based on their own experience? Obviously it's not the most pleasant thing to look at hence why I've linked the post and not uploaded the photos here.

Sorry if I'm being annoying, I don't really have anyone I can talk to about this in person except for DH but he's as clueless as I am. My health visitor is useless when it comes to anything CMPA. I feel you've all been so helpful so thank you.

Hi,
We’re in a similar situation with our LO. GP has prescribed gaviscon and said see how she gets on for 2 weeks but gaviscon is just masking a problem, not solving it.
I’m tempted to buy a tin of neocate myself and trial it rather than wait for the GP as it is awful seeing her in so much pain and unsettled everyday.
Wondering if you managed to get Neocate prescribed for your LO and if it made a difference to their symptoms?

Hello @Ojtx

We did get prescribed Neocate in the end and have seen a difference. It wasn't the easiest road getting prescribed Neocate however, I was persistent. I'd document evidence (baby's cries/rashes etc) and I kept a diary of her symptoms. I then went in and spoke about the pathway for CMPA and said I've tried Gaviscon, Omeperazole and I've also tried Pepti 1 and nothing has helped and the symptoms have persisted (refer to diary here) and then you should state that you believe baby may require Neocate. You really have to keep going on about it. I'd call multiple times a week sometimes as she'd always cry and be unsettled. I was so desperate.

Personally I'd persist with GP or 111 and get prescribed a supply of 4/8 tins as sometimes it takes up to two weeks minimum to see a proper difference and one tin may not really fully show you the difference. Even if you got it through 111 you could then say I got it through 111 and used it and it helped and I'd like more of it please.

Good luck. Happy to help if you need anymore info. I've been where you are. I'd spend hours researching how I can help her as she was always so unsettled and had all these symptoms. I'd say she's a lot happier however her reflux is still quite bad. Although she doesn't take Omeperazole anymore so that could be a factor. However, she's not in pain anymore, she doesn't have explosive nappies, rashes, arching back or refusing feeds etc