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?

Sorry the title is meant to say Neocate*

Anyone?

I would pay for an immediate appt with a specialist consultant . They can prescribe. You will probably need to pay for an allergy test.

once, before Christmas , dd was vomiting her neutramigen (sorry not sure if name it’s a long time ago, but it’s the one that is still cows milk but less allergic ). She was only 4 months so not weaned. She couldn’t keep anything down at all. GP refused neocate but thank god I got hold of the consultant who faxed the surgery (it was a long time ago) and made them prescribe it. No trouble after that.

DD was highly allergic to all parts of cows milk. I was also fobbed off I remember explaining how much she cried and the Hv saying ‘babies do that’. Endless visits to the GP. It was awful .

trust your gut and get an allergy test.

Also just to say the crying etc is exactly what my experience was. It is absolutely awful. Once you have a diagnosis it will get better. GPs in the main are hopeless at this.

Sorry also to say dd is fine with dairy now !

I can’t get over how how similar the symptoms are to my experience. You are right .

11 years ago, but the health visitor pushed the GP to prescribe nutramigen. She was soya, CPMA and wheat intolerant. I was lucky she got the milk, bread and pasta on prescription. She grew out of it by the age of 5 or 6

You can also buy it for the time being. It's bloody expensive - about £40 a tub! But it's available over the counter. I think even from amazon.

You shouldn't need a specialist though - our GP used to prescribe it. Perhaps try another one?

@Countrylife2002 thank you for your responses. Unfortunately I can't afford to go private at this moment in time as there's quite a lot going on in our personal lives. So having to go down the GP route. Did your LO have Pepti 1 at all? How long before you saw a difference in your LO?

Its exhausting. I feel guilty saying that and try to gloss over it in real life to cope but deep down I feel as though I'm a rubbish mother and am becoming a shell of the person I was due to constantly being worried/having no time to myself and bad sleep. It all takes a toll. A lot of people say that's just how babies are but only people whose children have allergies will understand that CMPA babies' symptoms are different to the traditional colic symptoms.

I had a CMPA baby and it was horrific!!!

Mine was breast fed so slightly different but it took me 6 visits to the GP, where I was predominantly crying as much as my baby was, before CMPA was suggested to me.

You have my sympathies because it’s truly awful and heart breaking.

Buy yourself a tub until everything is sorted through the GP. It’s not cheap but hopefully it will be worth it for both you and your baby.

Have a really bad time and go through 111 to get an out of hours appointment on Saturday night
She might be allergic to soya as soya is in some formulas. It’s also really common for babies to be ok for a couple of weeks and then they manage to join the milk bits up again and react again. Need a fully broken down formula with no soya.

Honestly looking back if I didn’t have the money I’d have taken out a credit card and paid on that. There was nothing more important.

What happened was that I was bf her, and going back and forth to the Gp. Eventually the Gp told me just to give her a bottle ‘she’s hungry’. I did that and huge allergic reaction. GP said it would take ages for referral and so we paid to see a consultant the same week , it was a few years ago now but I think the appt plus tests was under £200. Straight into nutramigen which was fine for a bit, and then it wasn’t. She was on neocate for years.

She did get better but it was only really on weaning that things really improved. If I had my time again I’d have weaned early.

be careful of soya too.

Demand the referral to a consultant who will then diagnose based on symptoms and they prescribed us Neocate

Yes this is what happened with nutramigen!

dd was intolerant to soya, so it didn’t show up in tests, but I worked it out immediately.

she was actually anaphylactic to cows milk so it’s appalling it takes so long in the NHS.

I think that’s a really good idea to go to a&e and try and bypass the GP to see a consultant and get the prescription.

Buy a tub of neocate: https://welzo.com/products/neocate-lcp-tub-400g?currency=GBP&variant=40936388755549&utm_medium=cpc&utm_source=google&utm_campaign=Google%20Shopping&stkn=27bbd07605a7&gad_source=1&gclid=EAIaIQobChMI897rt5S9hAMV9pFQBh1idgffEAQYASABEgIBRPD_BwE
For example

See if symptoms improve

If they do, re challenge with dairy formula

If symptoms return on rechallenge go back to the GP armed with this information and ideally a symptom diary. Would be hard for them not to prescribe it if you’ve proven it to be cmpa from doing the above.

Same with my now primary school baby, once she cried for so long and I was so tired I allucinated… one of the scariest things in my life. On the advice of a private sleeping advisor/midwife I manage to persuade the GP to just try some since omeoprazole was not doing anything…within 24 hours she was a different baby… angel GP continue to prescribe until
she was one year old. Hospital guided us through milk ladder, no allergy to milk now, actually a big drinker … paediatrician still would swear blind it “was only reflux” . It wasn’t and neocate was a God send. Trust yourself and good luck!

I was told, to my face, that I was a "neurotic first time mother" who needed to understand that babies cry. This was when my baby was head to toe in eczema that was being treated at GOSH and nobody would believe me about possible CMPA.

Try looking uo the NICE guidelines around eczema, possible allergies and a formula like Neocate. Print them out and hand them to the GP. Also call the hospital department where you've been referred and ask if you can be put on the cancellation list.

When you go onto neocate do it slowly so mix a proportion in with normal milk and then increase the proportion. I think I did it over a day. It does taste very different.

also remember it takes 6 weeks for dairy to completely leave the system so it won’t necessarily completely improve immediately but you should find your dd is happier to drink more .

https://cks.nice.org.uk/topics/cows-milk-allergy-in-children/management/suspected-cows-milk-allergy/

Print all this out, then click on the link in there 'extensively hydrolysed formulas' and it talks about prescribing amino acid formula, like neonate, if there are ongoing symptoms.

DS had CMPA and was prescribed Neocate. I went to my GP numerous times was fobbed off with eczema, colic etc... I knew it wasn't and in the end sat there and held my ground in that final appt and demanded a referral and a prescription.

He was a completely different baby once he got the right formula and with the help of the consultant referral went through the milk ladder and happily tolerates dairy now!

Ask your HV what your local pathway is..where I live you wouldn’t go straight on to an amino acid formula ( like neonate)..if suspected….first steps would be gp prescribing atrial of an EHF formula ( eg nutramigen ) …this can be either by direct parent request via a gp appointment …or via HV request to gp…..if symptoms imrpove then parent will be asked to reintroduce standard formula nd if symptoms recur then that will be enough for GP to continue prescribing and will meet the criteria for a dieticians referral……if symptoms do not improve….a decision will be made by gp and parent whether they think it still is compared and an amino acid formula trial is required….or whether an alternative diagnosis needs to be ruled in or out…eg reflux….once either EHF or amino acid formula had been prescribed…if the parents do not engage with the dietician then the gp will stop prescribing the formula….the dietician will support with weaning and introducing the milk ladder at 1 yr….hope you get sorted

Have you been referred to a general Paediatrician or to a Paediatric Gastro? You should be going for skin prick tests to see if it's an IgE mediated allergy (sounds like it) and if there are any other allergies. Soya and egg are quite common in CMPA babies.

Hi

Been here too.

Ring and get a free appt with Allergy UK. They will write to your GP

There are milk groups on Facebook where you could get some free tins if you wanted to prove a point with the GP

Problem is Neocate is 40 a tin and Pepti is 20

Keep a diary log of all symptoms and ring the GP constantly and show them your diary log of symptoms found that helped too.

@Kitkat1523 hello thanks for the response. She was prescribed Aptail Pepto 1 to begin with but after seeing some minor improvement we're back at square one. I gave the Pepti 1 another try when Omeperazole was prescribed but again, minor improvement and then back to square one. I really don't think the partial CMP milk is suitable for her either. I think she needs something like Neocate because symptoms are still there. She's also drinking less and less milk now and going longer between feeds. Not napping well either and just crying from all the symptoms alongside the lack of milk and naps constantly. We've given the partial formula a go so I think surely the GP should now prescribe something else?

In terms of the referral to a consultant, I was just told the referral has been sent. It's been near enough over 6 weeks. Not heard anything. X