What milk to get for cmpi

[Kaceywd]

Hi,

Ds is 5 weeks old and after what seems like an eternity of sleepless nights and days and constant crying he was diagnosed with cmpi.

The thing is, our Gp is useless. He used the words intolerance and allergy interchangeably which would be fine if he prescribed a formula but at first he said he can't cause its food (??) and when pressured he said he can but its not good quality and to buy it ourselves. The problem is, we don't know which one to buy. Should we try sma hypoallergenic or aptamil pepti or a totally synthetic one? Or should we call and ask for a referral to a pead since he didn't know what he was talking about?

I would try aptamil pepti 1. It's an EHF, can be bought over the counter and is more reasonably priced than the amino acid formulae. Just until you can be seen by paeds

@Ediemccreedy over the counter you mean chemist's? I've look at the websites of boots superdrug and supermarkets and can't find it

In Ireland it can be bought without prescription in pharmacies.
I thought it would be the same in the UK, but maybe not.
If that's not an option I would call the GP in the morning request a prescription and referral.
I hope it works out for you, it's so tough to deal with.

@Ediemccreedy I will call the pharmacies near us tomorrow, thank you!

DS was breastfed but as soon as I started weaning him and used formula mixed in with his food he got a rash as soon as the milk touched his face. His nappies were grim too. He was diagnosed with CMPA. We were prescribed Nutramigen. But we were referred to a consultant (doctor and HV were both quite clueless) who prescribed the milk.

DS was prescribed Pregestimil (based on coconut I believe?) absolute miracle worker! Within 24 hours he was a happy baby - feeding, sleeping, calm - an absolute transformation!

So many different types! Are there any other criteria that helps them chose or they prescribe what they think is the best?

www.hey.nhs.uk/wp/wp-content/uploads/2016/03/prescribingSpecialistInfantFormula.pdf

Some prescribing guidelines and a good explanation of the different milks. Really hope you get it sorted soon.

Our daughter has been diagnosed with the same after weeks of inconsolable crying and developing a rash after every feed. We were prescribed Aptamil pepti 1 and she's like a different baby! Be persistent with your GP - our HV said that some GPs are reluctant to prescribe special milk because it's so expensive so they may try and fob you off! The Aptamil pepti 1 is £30 a tub to buy!!

Thank you @Itllbeaninterestingchristmas for the link

@buntyjones we haven't even seen the hv yet and the midwife was clueless as well not just for the baby but for my infected c section incision as well!

Were thinking of going to A&E since it seems to help move things along. I just hope nothing has changed now with covid

@Kaceywd did you go to A and E? How are things?
If you still favent got milk ho uo the pharmacy and ask yo buy one of thd following.

If you want to gova full brlt and braces hob uou xan butcancamino acid formula. It us very expensive. Nutramigine-puramino, Neocate syneo, neocate LCP, SMA alfamino. Theee can cost upto 45 for a half size tin.
If you want to hope the EHP fofmula eotksn which it fies for a large amohnt if babiesn and certainly imprives things for orhers whilst you wait for an appointment, id recommend asking for any of the following: Similac alinentum (the pharmacust has this behind the counter and its the cheapest), aptamil pepti (0-6mths), aptamil pepti 2 (6-12mths) Nutramigen LGG 1up to 6mths and nutramigen LGG 2 (6-12mths) or althera formula. You often need yo ask the pharmacist yo order these in for the next day. I hope these help. Meanwhile try to give baby gentle tummy massages in a circular diection, and if a lot oc vomiting is taking place you might be better fof now to try giving a hungry baby formula (eg hipp organic ready made cartons) as it contains agents which thicken and float on top of the milk layer in the stomach (to cause a feeling of fullness) but and also making it harder to regurgitate and vomit.

@glamgiraffe thank you!

We called the A&E and an awful lady picked up and said as long as your baby is breathing and not bleeding don't come I was shocked.

The pharmacist made us try lactose free first even though I think it's a waste of time, but at least we will be able to tell the paed that we tried it. We asked the Gp for a referral but er haven't heard back yet, we need to chase it. So tired emotionally tbh

Update :

The pharmacist didn't let us get pepti without trying lactose free for a few days. I find it unnecessary and it has upset ds but it's only for a few days.

I'm trying to make a list of symptoms for when we see the paediatrician (when we get referred)

Please let me know which ones are relevant.

Excessive crying within minutes of finishing his bottle, arching back, straining, turning red, bringing up milk even hours after last feed despite being burped a lot (every 1-2 oz while feeding, after, and kept upright for half an hour if not more), straining to pass gas. Before he would poop a couple of times a day normal seedy poo (straining a lot though) but for the last week he barely poops once a day very soft poo and even more straining all day. He sounds mucousy and sometimes when he breathes it sounds like snoring. He hates laying down, gets the hiccups after every feed which seems painful. Can only sleep on us but I think it's cause we hold him upright. He keeps getting worse.
Cries so so much and he's visibly in pain it's so hard for me all I can do is hold him burp him keep him warm please help ☹️

Have you tried Out of hours gp? Pick a time he’s quite bad, phone 111 and get a gp appointment at hospital. If your surgery is closed at the weekend phone on Saturday morning.
I had thrush in my breasts once, had been to the gp, just fobbed off. I was in agony by the weekend and it was all sorted by an ooh gp appointment.

I'm really cross on your behalf that the GP fobbed you off and the pharmacist is woefully ill-informed. CMPA is cow's milk protein allergy which is completely different from lactose intolerance; the baby is allergic to the proteins in cows milk and not the lactose (which is a sugar found in every milk). So a lactose-free formula will do fuck all.

You need to go back to the GP, preferably a different one, and take the NICE guidelines with you:
cks.nice.org.uk/topics/cows-milk-allergy-in-children/

Your GP should prescribe a hypoallergenic formula - Neocate is the best one but it's expensive so they are reluctant to prescribe it, they might prescribe something cheaper like Nutrimagen to begin with.

They should also refer you to a paediatric dietitian.

Don't wait for a paediatric referral to get formula on prescription, though - you'll be waiting a long time for an appointment and you can't keep giving cow's milk formula in the meantime.

Also lots of helpful info and advice here including a list of symptoms which you can compare to your baby's symptoms
www.allergyuk.org/information-and-advice/conditions-and-symptoms/469-cows-milk-allergy

In our case the main symptoms are reflux (and all the associated problems - hates lying down, terrible sleeper, gets hiccups, arches back and is inconsolable when suffering) and very frequent acidic poos which cause horrible nappy rash that doesn't clear up no matter which cream we use

@Itllbeaninterestingchristmas

Have you tried Out of hours gp? Pick a time he’s quite bad, phone 111 and get a gp appointment at hospital. If your surgery is closed at the weekend phone on Saturday morning. I had thrush in my breasts once, had been to the gp, just fobbed off. I was in agony by the weekend and it was all sorted by an ooh gp appointment.

This is how we eventually got taken seriously. We were lucky in that the out of hours GP’s own children had CMPA so she took it seriously. She prescribed ranitidine and recommended our GP refer us to a paediatrician and dietician.

Hiya,

So we went to A&E, they sent us to outpatients, the outpatients doctor got annoyed they sent us there cause they have no idea about kids, he said try comfort first while you wait for pepti to get delivered so you can tell the community paediatrician that you tried it. Wasted time tbh, I guess Birmingham is in such a bad state they just wing it 🤷‍♀️ I'm tired tbh, we got cow and gate comfort for these 3 days and then we will try pepti for two weeks, if nothing works we'll go privately.

Thank you all for your advice ❤️
Last question, do think comfort will make him worse?

Only seeing your update now. So sorry you and your baby and partner are going through this. Comfort won't make it worse. How are things now?

@Ediemccreedy hi sorry just saw your post! We tried comfort and it made him feel a bit better but we had two problems, the milk would separate in his tummy and he would spit up the watery part, and it made him really constipated. We ordered pepti but our order didn't go through the first time so we had to order again and meanwhile we tried hipp (just so we know that we tried every brand). Now with hipp we have a lot of crying and he only takes half a bottle but feeds more frequently which is killing me cause double the crying and no sleep. Hopefully pepti will come tomorrow and I pray it helps him

I hope you get it soon and that it works

I’m another one who got fobbed off by GPs who kept telling me what my baby was doing was just normal baby behaviour and was just colic and reflux.

To me, a baby screaming in pain for hours and hours and hours and hours is not normal.

I ultimately had to see 5 (!) GPs before it was suggested my baby may haves dairy allergy. He was breast fed so I removed dairy from my diet and I had a different baby.

GPs can prescribe prescription milk for CMPA and it’s disgusting that you have just been left.

The whole thing for you, between having to go to A&E because you felt you had no other choice, to then being told to use Lactose
Free milk is just horrendous.

I know you said the GP is a Practice Partner but you should still put in a complaint.

I hope your milk arrives soon.

My child was on nutramigen for 12 months. He liked it and his reactions stopped when he started on this milk and the whole family went dairy free. Nutramigen is not actually dairy free, it just has the proteins broken down so it’s easier to digest. I can’t remember the name of the dairy free version but they start you on nutramigen first (it’s cheaper).

He was diagnosed with CMPI by a Dr and dietician- it took quite a while to get a referral. They don’t generally do blood tests for young children.

The good news is that many children grow out of it.