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?

We had the exact same problem trying nutriogem and pepti 1. Luckily we ended up seeing a lovely doctor who straight away put my boy on neocate without any questions. The neocate did seem to help his symptoms, however I think the thing that helped the most is being prescribed carobel by the peadatrician. As soon as he started on that he was like a completely different baby, managing to keep milk down which helped with his sleep and making him much happier. Honestly it was a life saver.

Also just to add, we had tried gaviscon and omprezol before the carobel.
Also the Doctor prescribed the neocate not the peadtrician so they definitely can prescribe it.

Carobel stops vomiting but it won’t help with a dairy allergy.

I’m sorry you’re going through this, OP. I had the same with DD and she was 4 months before we finally got milk prescribed, by which point I had attempted suicide and was under the crisis team
and social services. She was a different baby within 2 weeks and I finally got some sleep and started to heal.

Look up the prescribing guidelines for your area.

eg these are for Hull area and say that GPS cannot prescribe Neocate https://www.northernlincolnshireapc.nhs.uk/wp-content/uploads/2023/10/Specialist%20infant%20formulae%20final%20Oct%202023.pdf

but these are for Luton, Beds, MK and say that GPs can prescribe it and outline when: https://www.cambscommunityservices.nhs.uk/docs/default-source/Beds---Food-First/bedfordshire-countywide-prescribing-guidelines---specialist-infant-formula-december-2019.pdf?sfvrsn=4

If you need help finding them I’m happy to search for you if you want to PM me your town.

Definitely chase the paediatrics referral, and ask for one to a dietician as well. They may not be much help now, but you’ll need their input to stay on the formula past 12 months (which must seem ages away now!).

Also look up Main Group - CMPA Support on Facebook. Really knowledgeable collection of people who have been through this!

Thank you @AttaThat I've had a look at my local guidelines and found this flowchart (attached). Does the highlighted yellow part mean that the GP cannot prescribe it? I've not heard from any paediatric allergy service and it's been almost two months?

In this case do I just go down the 111 route?

Wouldn't they think I'm daft to go to A&E for this as they wouldn't class this as a medical emergency?

Thanks

I can’t see the whole image but I’d say your daughter’s symptoms sound severe rather than mild to moderate.

My daughter is now 15 and still anaphylactic to milk and this brings back horrible memories.

The way new mums are treated as if they are neurotic is terrible.

I had to push and push and didn’t get neocate until my daughter was 17 months old after the worst 17 months of my life. Thankfully I was able to breastfeed but she screamed constantly. As soon as she started on neocate, she was a different child. They didn’t believe Pepsi or neutramogen were making her poorly until she had tests at 11 months.

don’t let them fob you off. Keep talking to your health visitor, GP or anyone you can.

look up dr Adam Fox - he seems the most knowledgable allergy doctor I’ve come across.

I hope it improves and doesn’t last a lifetime like it has for my dd.

I read that as your GP can prescribe it (AAF = Amino Acid Formula which is what you want), and should be making a referral alongside the prescription.

I hope you get sorted today!

@AttaThat thank you for your response. Yes, after reading it again, I agree. The GP should be able to prescribe it. Slightly nervous because I've always been fobbed off but I'm going to go in armed with all the information from this thread as well as a diary of symptoms. Hopefully that should hold some weight 🤞🏻 but I wouldn't place a bet on it.

I think if he fobs me off I'll be calling 111 later today, not sure if 111 can prescribe a AAF but I'll have to give it a go

Hello everyone,

Thank you for all of your help with this post. I wanted to provide a little update and ask for some more advice please as you were also so helpful.

So we went to see the GP on Thursday
and the GP said that he thinks Omeperazole can help fix her issues (alongside the Pepti 1). He agreed that if nothing changes then in 2-3 weeks we'll change her formula to an Amino Acid Formula (I think that's what it's called?!)

He said the reason he's reluctant to prescribe it straight away is because in his experience children that require AAF formula have terrible skin rashes and eczema. My DD doesn't have this anymore (since being prescribed Pepti 1) so he said he thinks that Omeperazole alongside the Pepti 1 should help.

He doubled the dosage of Omeperazole as he said she was on the lowest dose - again we saw a difference for one day (yesterday) and now she's back to square one again with the same symptoms that I've previously mentioned on this thread. SO SO SO unsettled, to the point she won't nap properly which is making her even more unsettled and over tired. Yesterday she had a good few naps and was so much more settled throughout the day, she was like a different baby (not that I'd want to change who she is regardless of how she is, but she was a lot more settled).

I'm not too sure about this because after a day we're back at square one. Did anyone else's child who was on AAF milk have the other symptoms more so than the rashes and eczema? Initially she did have the rashes and eczema but that's cleared up since Pepti 1 was prescribed. However, the other symptoms are quite bad. Should I stick it out with the Omeperazole (and cry myself everyday with an extremely unsettled baby) or should I speak to the GP this coming week and say after a day we're back at square one?

Thanks

Buy some neocate and see if it helps. If it does ask for it on prescription. Adding more medicines isn’t sustainable really.

Both of mine have needed an AAF, one got rashes the other didn’t.

One is now on omeprazole for reflux, it kicked in within a couple of days, I definitely wouldn’t wait more than a few days before going back.

@DownWhichOfLate yep. I agree. I think what threw me off was that the GP was almost 99.9% certain that increasing the Omeperazole dosage would be the answer to these symptoms. I don't want to act as though I'm trying to over ride GP's professional opinion so was wondering if it's possible for a child to still require AAF formula without rashes and eczema so that I know it's not just in my head? sorry im probably making no sense. The tiredness is really getting to me 🙈

@AttaThat thank you for responding again, you've been great help! The one that is on Omeperazole, would that DC still have symptoms when on the hydrolysed formula even when taking Omeperazole?

It’s hard trying to get something whilst tired, stressed, and hearing a medical professional telling you the opposite of what you think! Get an appointment for Monday and say that you have tried the Pepti 1(?) etc, and you need the neocate now. Be as firm as you can. Your baby needs this.

My baby had / has CMPA but only had a bit of eczema etc, but has been so much more settled / happy since being dairy free.

If you really feel your gp will fob you off can you take someone with you to help advocate?

DD didn’t have any skin issues but still needed AAF formula.

This is 3 years down the road that he’s now on omeprazole, it’s separate to having needed an AAF as he can now have dairy. My point was more that in my experience omeprazole works pretty quickly, you shouldn’t need a 2-3 week trial of it.

I would read your guideline as that your GP is able to prescribe neocate (an amino acid based formula) but has to refer onwards at that point if not done so already. If they're not sure, one option would be to contact paeds and ask. They may be able to do this via an online system (often called advice and guidance), or via phone. Most areas will let a GP prescribe is paeds has advised it, and will be seeing the baby.

Ds was cmpa and severe reflux. Gp fobbed us off for months with ranatidine (now discontinued?) and nutramigen. No rashes, only constant vomit, screaming, not sleeping, hiccups, constipation. I got Alfamino and omeprazole prescribed from a&e paediatrician in the end, at 8 months. Took a couple of days for the first signs of improvement, a good couple of months for the vomiting to stop. They were horrified at his treatment.

@user666555 dd was severely allergic to all of the elements of cows milk and never had any rashes or eczema. I wouldn’t worry about questioning the GP. I learnt that I knew a lot more about DD’s allergy and how to treat it than the GP did. They are not experts in this.

It really sounds as if the GP is treating the symptoms but not the cause. And you need to know if your baby is allergic. DD was anaphylactic. She never actually had that reaction thank god but it was important I knew it was a risk.

After 5 visits to the GP surgery about my babies symptoms (and being fobbed off) I was very lucky that the 5th GP I saw was a Locum who had a CMPA infant himself so he knew all the symptoms. He was aghast that none of the 4 other GP’s had even considered it was a dairy allergy.

On reflection I think they probably were suspicious it was CMPA but thought that the potential costs related to a diagnosis meant that coming to the diagnosis would be their last resort if nothing else worked.

It took 4 months of going back and forth before CMPA was suggested by the Locum doctor and I still feel let down.

I also felt very angry at myself for not pushing this diagnosis but it hadn’t occurred to me as my baby was gaining weight, he wasn’t vomiting and his nappies were normal etc so when I kept being told his symptoms were just down to reflux and “normal baby eczema” I had no reason not to believe then ☹️

Oh OP, I'm sorry. This brings back awful memories for me too. I ended up with PTSD from it all.

We got neocate from A&E. Do you have an A&E with a children's department? Where abouts in the country are you? If they won't help, I would honestly do everything to get together £200 odd to see a private paediatric gastroenterologist.

How are her nappies? We found that our DD was also full of poo (despite not appearing constipated). Once we got this under control with paediatric movicol, everything else also massively improved. The reflux was so much better because the milk had somewhere to go!

As I said a few days ago, look at the NICE guidelines and click on the link in there called 'extensively hydrolysed formulas' and then you get to a page with NICE guidance for GPs on prescribing amino acid formulas. Show that to your GP, print it out if necessary, they should be following NICE guidelines on this. That page tells you AA formula should be prescribed with ongoing symptoms, which your baby has.

@PragmaticWench thank you. I've had a look at the guidelines and told the doctor that her symptoms are on-going, he said he thinks omeprazole is more suitable as she doesn't have skin rashes and babies that need AAF milk usually have skin symptoms that are quite bad. It then made me think that the GP would know best and I don't want to give DD something she doesn't actually need if she can be without it.

However, the Omeperazole's effect was extremely short-lived and lasted one day which is now making me think that perhaps DD is of the 0.1% (as he was 99.9% certain) that have minimal/no skin symptoms but still require AAF formula?