How to approach feeding with doctor?

[Lmcx]

I need some advice on how to be a big brave girl..

my daughter is 11 weeks old, we had quite a journey, she has had her tongue tie snipped at 5 weeks, has never been able to latch efficiently to get full feeds. I decided to pump exclusively to feed her. I would say around the 5 week mark the real nightmare began. My daughter became very colicky, reflux, screaming during feeds and mucous nappies!
she doesn’t refuse feeds, quite happy to drink milk, but when it comes to winding, she screams and when feeding ends, she is uncomfortable. she does not have a rash, but does have a sore bum (I lather her with sudocream every change and change her regularly)

I do suspect allergy, so I eliminated dairy. My girl has always gained around 4-5 ounces per week, however at her 7 week apt with HV she dropped from 50th percentile to 25th percentile. The HV said quite common in reflux babies, I couldn’t quite understand as she is not bringing up full feeds, it’s normally hours after the feed and small spit ups. Anyway continued dairy free, she was weighed the following week and she gained 7.5 ounces!

so long story short, I went to GP to discuss potential allergy. I raised concerns that I pump on demand for my daughter, there may be a time where she is having growth spurt or when she is with my mum, that she runs out of my milk and would need the prescription formula as an emergency. I will say, that week in particular I was exhausted (I’m a single mum) wasn’t able to put baby down, or look after myself with eating and I was getting frustrated so wasn’t feeling on top of everything or a good mum..

he told me breast milk is best for the baby, formula is full of artificals and as gps they won’t prescribe this … I didn’t even say anything, I just took it, I felt awful in the moment to be honest: I know it’s best for the baby, but I’m not able to feed my baby from me. I have to pump, I feel I am tied to a pump which I can just about manage, but what if my supply dries up?

I am at my wits end, I have tried everything known to man. Since I have cut dairy, she does seem happier, but could be that she is just out of the newborn trenches so I don’t know if it’s cutting out dairy that has helped But what do I do about the gp? Is this the stance gps take?

I can’t believe I have gotten to 11 weeks with pumping! My original goal was 3 months, I’d like to go to 6 now! But would also like the formula for those just incase emergencies, but felt like an awful mum for asking

I am so sorry you had this experience. He sounds like a dinosaur. Well done for getting this far with pumping. Pumping is a time consuming, demoralising business. If you can go longer that is great, but remember ‘breast is great, fed is best’.
Needing formula either intermittently or full time is absolutely allowed. Are you able to see a different doctor or a nurse at the clinic to have a better discussion? Or can your health visitor help you out with who to talk to? Can you take someone with you to the appointment to help fight your corner for you if it is the same doctor?
In the meantime Iit worth trying to reintroduce some dairy into your diet to see if baby tolerates it better now?

Symptoms sound exactly like my CMPA baby.

Go to a different GP. Of course you should get prescription formula.

I will say though that the amino acid formulas taste really rank. My baby never accepted it. From my experience, I don't think combi feed will work well with a dairy allergy baby. It's why I am still bf at 8 months, so don't get your hopes up too much.

I feel you, pumping is horrible.

Please try and change GP OP or get a second opinion. Formula is absolutely fine for baby. You have done phenomenally well to exclusively pump so far and you should be proud of yourself. Sorry your GP has been so unsupportive and I hope you get the help you need asap.

Could your baby instead be lactose intolerant?

@jonahpops lactose intolerance is quite rare and tends to make breastfed babies quite poorly as breastmilk is high in lactose. Cows milk protein allergy through dairy in mums diet is much more common

@Lmcx this sounds a lot like my daughter. She has multiple food allergies, severe silent reflux and mild-moderate reflux causing her to have feeding aversions, poor latch and to be permanent unhappy. Her initial GP was pretty hopeless and just told me reflux was a washing problem and babies that react to breastmilk got very poorly as it would appear she didn't know the difference between cmpa and lactose intolerance. She also didn't pick up on her silent reflux so was only treating her physical reflux. She had slow weight gain too along the 9th percentile as she was only feeding enough to satisfy the immediate need for milk. She went down to second length breastfeeds before pulling off and screaming. After removing dairy and soya etc she went up to the 25-50th percentiles
I needed to remove soya as well as dairy as she's allergic to both like about 50% of cmpa babies. She had a bunch of other allergies too. Her reflux was made worse by the allergies but was separate so she's needed high dose reflux treatment too. She was 4 months when she was diagnosed after seeing a paediatrician for something else. I asked about formula as was given breastmilk is best and it's easy to remove dairy and soya. I wish I had pushed more as I ended up in a poor physical and mental situation and forced to stop breastfeeding cold turkey at 10 months which was a harder transition than it would have been at 4 months. I would see someone else about formula. Given the reaction to breastmilk I'd ask about an amino acid formula as these are completely dairy free - neocate or alfamino are the two that are usually prescribed. The first line of formulas are dairy based but with the proteins broken down this is sufficient for some babies but for sensitive babies they can still detect the proteins as dairy. Babies that react through breastmilk are more often in the more sensitive category.

Are they on any treatment for the reflux?

It might be worth testing soya too if theres some lingering symptoms

@jonahpops lactose intolerance in infants is incredibly rare. It's something that develops much later in life.

This is not the stance any sensible good GP would take. I am a GP. You have quite clearly described an improvement since cutting out dairy, so the diagnosis of CMPA seems likely.
Ask to see a different GP at the practice. Might be worth asking the receptionist which GPs have an interest in child health, some do.

Your baby should also be referred to see a dietician for support with reintroducing cow's milk protein when the time comes, so ask for that too. In my area there's a 26 week wait for paediatric dietician so better get the referral in asap. When to start milk ladder will be advised by the dietician.

If its just a tin to keep for emergencies you can buy them in tescos

No good GP would behave like this.
I said straight away I would not be breastfeeding. No questions asked, it was a tick in a box and onto the next question.

They would maybe not give you anything until you trial normal formula and see if she gets adverse effects. Maybe try a small carton of premade formula and see how she gets on with it

The formula in the supermarkets are dairy based and the exclusion of dairy from mum's diet followed by an improvement in symptoms in baby would suggest that it has a dairy allergy. The hypoallergenic formulas are available on prescription or very expensive approximately £20-40 for a 400g tin!

In my tescos I can get the dairy free aptamil

If you mean soya formula then that's not the first line choice for dairy intolerance/allergy

It's lactose free not dairy free. Lactose is a milk sugar but babies with cows milk protein allergy are fine with the sugar but allergic to the proteins in dairy.

Oh I'll have another lookie when I'm next in but I'm sure it's the dairy free one but now I'm not so sure. Could be the other stuff.

You can order some off amazon though if you just need a tin for emergencies

sounds like my cmpa baby - I had to give up all dairy (including goat, feta etc) and soy. Soy has the same protein in it so you have to cut that out too, if it’s cmpa.

Yes same here. I had to cut ALL dairy and ALL soy. Be careful with pesto, sauces and takeaways. The proteins go in the breastmilk and cause their gut to inflame, which is why you have symptoms for days even though you only had soy once for example.

You also get build up reactions as the protein builds up in their system for up to 6 weeks so your baby may tolerate you having a bit of butter here and there and then all of a sudden will have a reaction that seems to come from nowhere.

You're doing amazingly! Doctor sounds horrendous but it doesn't surprise me at all.

Ladies, thank you.
i came out wondering if i had been sensitive as i was having a terrible week with the baby.

thanks for sharing your CMPA experiences also. Pumping is ok for now, I know some mums can go for 12+ months but it is very difficult, when I am going to switch I will call gp and explain to the receptionist that I would like a more supportive and understanding doctor when it comes to prescribing formula. I am keen for it to be a prescription so it’s noted that my daughter has CMPA. Although I’m dairy free and she is much happier, she still has mucous nappies, so I’m now going to trial cutting out soya.. oh it’s tough!

xx

Cutting out both dairy and soy is difficult at first. I don't think anyone really understands until they've been through it, it's such a learning curve.

And not being able to get a takeaway or a ready meal when you're in the throws of sleeplessness is so annoying!!

Bread has been the hardest adjustment for us as soya free. The best supermarkets for soya free bread are Tesco, Aldi and coop. The vast majority of their own brand breads are soya free. Pretty much all branded bread contains soya but bread products like wraps, bagels, pittas and bakery bread is often soya free.
There are quite a few dairy and soya free chocolates out there.

My HV was able to make a referral to a dietician to help get the cmpa recognised.

The dairy free formula tastes disgusting and it can be harder to get older babies to accept it so it might be beneficial to discuss it with the GP soon and give the occasional bottle to get them used to the taste. My daughter started with formula in food from 8 months and took time to get her used to the taste. She had a bottle aversion that was the bigger issue but it can be difficult to get an older probably 6months+ baby to accept the formula