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?

Who diagnosed him with the CMPA and how?

DS has CMPA and has been prescribed Nutramigen 1 by the GP. It's absolutely disgusting but seems to be helping. Apparently there are better tasting ones out there but this is the first one the GP prescribed. Absolutely no fucking way would I be buying it myself at £15 a tin which is half the size of a normal tin of baby milk!

Ask for a referral to paediatrics. If you don’t get on pick a bad day for the baby and roll up a a&e. I didn’t with my first and basically put him through more pain that was necessary. Number 2 lost so much weight so fast the gp couldn’t refer us fast enough
Ds had nutramigen but that contains soya. He was fine in it but later developed a soya and egg allergy. DD was on nutramigen but developed a soya allergy at 5 weeks old so is now on neocate. The formula is only used for top ups so I can’t eat dairy or soya.

Honestly I'm skeptical about the massive increase in babies being diagnosed with it. I almost got sucked in to what I believe is a fad. The symptoms are just normal baby stuff. I did even take him to the Dr who told me to just get on with it.

I did, and all is fine.
Just be careful what you're doing because it is totally normal for babies to cry (yes for hours) have reflux etc etc.

Ds is 5 weeks old and after what seems like an eternity of sleepless nights and days sounds like a normal baby to me!

DDs symptoms were weight loss, constant diarrhoea (we could get though 3 or 4 nappies in 10 minutes), inconsolable crying and constantly being sick. Admittedly being sick constantly is still a problem.
DS would scream all night every night and only sleep in 15-40 minute chunks. The only reason he didn’t scream all day, just most of it, is because I held him or pushed him out in the pram. His nappies were also explosive.

@Horehound if I had a way to be sure that it's normal and will pass I wouldn't mind. Ds barely sleeps 7 hours a day and spends the rest crying and straining to pass gas or stools and vomiting. I don't know if it's a trend or not, but I know that I've been trying my best to help him

Honestly this sounds like my boy. We used infacol, burped, and he slept upright on me for three months basically. It took sometimes hours of my husband holding him over his shoulder to get him to sleep then he'd pass him to me and he'd sleep on my chest and I wedged myself in-between a v shaped pillow.

Is he breastfeeding at the mo?

@Itllbeaninterestingchristmas we get explosive nappies but not so many. We have the same sleep problem though, just this week he managed to sleep somewhere other than on us and for 10 15 min. It seems like everything is getting worse

I tried going dairy free whilst breastfeeding our youngest and it made such a huge difference to to colic and reflux. Then at 6 months the very first time we tried weaning on baby rice and normal cows milk formula he immediately came up with raised red patches on his face where the milk had touched him! Took him to gp with photos of his reaction and he diagnosed CMPA and prescribed Aptimil Peptil formula for the next 6 months. It worked wonders. He also was given a blood test to check for allergies and it was confirmed he had Immunoglobulin E mediated cows milk protein allergy so no, Horehound not all symptoms are just norma baby stuff and should be investigated properly not dismissed by parents or HCPs and yes OP GPs can and do prescribe formula and also should refer to the hospital for bloods for confirmation (although a negative blood test doesn’t necessarily mean the child isn’t allergic it’s just not a IgE mediated allergy which means long term treatment is different) and ask to a child dietitian. And I’d fully recommend requesting the GP to prescribe Peptil, no soya and actually tastes ok.

@Horehound he's ff we tried breastfeeding but unfortunately I couldn't make it work. He's on aptamil

We were prescribed similac for ds from 5 weeks old however we later found out that still has cows milk in it but is broken down, which explains why he was sick constaly until we saw a dietician at 10 months old who put him on neocate lcp. I must have taken him to the gp at least 12 times in that 10 months and was fobbed off every time telling me that baby spit up was normal. But ds would littler throw up randomly all the time and just leave a puddle of milky sick. He's 2 next week and is no where near the milk ladder. Every time we try reintroduction, his poo burns his bum so badly straight away he crys just from walking.
Trust your instincts and ignore ridiculous comments that it's a fad

@Clangerschick thank you x I will try to get referred to the paeds team and hopefully a diatitian. Its just so difficult I don't know if we should change our Gp but they make everything so hard

I didn't say it doesn't exist I said I think it's less common than what people make out on here. The reason I got sucked in is because I stated above what I was going through with my boy, so many people suggested it, I did research, convinced my husband, took him to Dr and then saw sense.

If I had pushed the Dr probably would have given in but it would have be detrimental to my son. He's 13 months now and still breastfeeding

Don’t buy it yourself, it’s extremely expensive and there are so many specialised milks it’s not as simple as just going to Boots and buying one. Your GP should have a prescribing policy to follow, and you should have a follow up appointment and referral to a dietician for advice regarding weaning. Can you see a different GP, or contact your HV?

Well whatever happens, op, I wish you well. It's horrid going through this so you have my every sympathy.

Ask for a referral to a paediatrician, they can tell the GP to prescribe neonate or nutramagen.

I would say you need to go back and see a different gp. What you've been advised is awful and personally I would be writing to the practice manager

@Jamhandprints we've been struggling since birth, first they said its colic and gave us infacol, didn't work. Then reflux and gave us gaviscon, didn't work. He's been getting worse, sleeping even less and for the first time this week we've have explosive nappies but he still strains trying to poo or pass gas. The Gp said that it looks like an allergy /intolerance and to change his milk. Didn't seem very confident telling us more though

@Pearsapiece unfortunately he's one of the practice partners

God you have my deepest sympathies. My LG is now 10 months and I NEVER want to relive her first 3 months of life. Absolutely awful.

She has CMPA & silent reflux. Like you I was fobbed off with 'colic' and 'babies cry'

I could clearly see my baby was distressed and I knew that this wasn't normal.

I'd had enough and done what a previous poster has mentioned. Straight to a&e, was given neocate & lansoprazole. Things improved massively.

@mummyslittlenightmare we're getting fed up as well and think of doing the same it's just we're a bit worried now with covid as well and making ds spend the day there without achieving something

There are a list of formulas that the health visitor/GP can work through - the first set are extensively hydrolysed formula and then there are amino acid formula if those don't work/if the reaction is more severe. If you search for NHS CMPA formula you should find the list, I'm not sure which you can buy in a shop.

Do you have a health visitor? You might have more success raising it with them.

@onetwothreeadventure we haven't even seen the hv yet they said they will call and nothing, our surgery seems less and less professional :(

Health authorities all have prescribing guidelines and can, and should prescribe specialised milks where indicated.
CMPA and cows milk intolerance are becoming much more widely diagnosed because people are becoming aware they exist and asking questions and pressing for a diagnosis.

Both my children suffered from near identical symptoms, the only difference was a 15 year age gap. My oldest suffered terribly, my youngest was diagnised with CMPA and prescribed appropriate milks. Her symptoms were treated and she flourished.

1. Ask to see a prescribing dietitian in your area or a specialist in CMPA. Depending on your area you will have one or the other.

Once a diagnosis is confirmed they will probably try prescribing an EHF (extensively hydrolysed formulas).

All these formlas are made from cows milk. People with cows milk protein allergy react when the body recognises the specific chain of protein which exists in milk (imagine it like a string of beads in a long necklace). In EHFs the protein strings are broken into small segments (for example 3 beads long not the whole string) the body is lesslikely to recognise this as being the thing it is allergic to as in most people it is only allergic to the full length protein chain.
Often babies are instantly better on an EHF only to get worse again in which case they require an Amino Acid (AA) formila (imagine this as the chain being broken down into individual beads which the body doesnt recognise as being part of the full protein chain as they are in individual parts). An example of such a formula us Nutramigen-Alfamino as is neocate
These formulas are extremely expensive and are available on prescription. You should be followed up in a specialist paediattic allergy clinic if your child us on these formulas as you will need help with weaning and introducung them to dairy via the milk ladder.
It should be noted that people who are allergic to cow's milk milk protein are most likely allergic to all mamalian milks such as sheep and goat. Similarly there is a high degree of similarity with the protein structure if cows milk and soya milk and in very sensitive invididuals soya formulas can also provoke a reaction so should be avoided.

Press for an appointment with a specialist. Goodluck. The right milk will transform your child.

@GlamGiraffe thank you for explaining it, we will try to get referred. Meanwhile I feel bad not trying anything to ease his pain, what do you think about sma hypoallergenic? Will it help even just a bit?