Cow's milk protein allergy.. Hv saying one thing.. Doc another. What would u do

[Alwayssearching]

So dd is nearly 6 weeks. Was knackered cow and gate but struggled to go to toilet and colic. So at two weeks moved her to. Comfort milk on advise of hv. Anyway three weeks later she's having diarrhoea, slight vomit and blotchy face rash.. However is gaining weight which is fab. Hv today said she believes it's cmpa and to see gp for two weeks of prescription milk to see how that goes. As would need two weeks to see of any improvements.. Fine
Went to gp today and he would only prescribed three days worth well if that. One 400g, tub.. We norm use just over 900g in a week. I said that wouldn't be enough time and he said we'll ring in a couple of days with an update. ( surely that wouldn't be a decent enough time scale to know?) then he'd prescribe more.. However it's also a days wait for the chemist to stock ( was lucky today they had one but they said they dont normally have it)

So, my concern is. I chnagr her formula to prescription today. Then I won't have enough time to notice a diff. Then if I do, it's going to be hard to see who has in stock if a day's wait to order, then I'd run out and have to use normal formula then I'm going to really mess up her tummy.

The doc even read the notes in red book which said two weeks needed! And he said he wasn't prepared to..

Using cow and gate. Dunno where knackered came from

Totally ridiculous on the part of GP. It will be cost-driven.Dig out the NICE guildelines on CMPA and ask to dicuss those...

Here you go, a bit from the intolerance where referral not warranted bit:

If referral is not indicated, advise a trial elimination of cows' milk from the diet for between 2–6 weeks, followed by reintroduction of cows' milk to prove that it is the cause of symptoms. Seek advice from (or refer the person to) a paediatric dietitian with appropriate competencies for guidance on nutritional adequacies, timings of elimination and reintroduction, and follow up.

[...]

In formula-fed or mixed-fed infants, advise the parents or carers to replace cows’ milk-based formula with hypoallergenic infant formulas.

cks.nice.org.uk/cows-milk-protein-allergy-in-children#!scenario

While that does sound crap and I can’t imagine giving up on that formula 3 days in, you might be surprised how quickly you see an improvement. When my DD has lactose intolerance, it only took a few hours to see a difference. I know it isn’t the same thing though. Will you need another appointment to get more?

Which one is it? I noticed a difference in 3-4 days, as long as you are seeing some improvement then ush for another one. It is very expensive though.

Spartacus that spunds apalling. Did you complain?

Speak to your HV and ask her to intervene with the GP.

It is shit behaviour on the part of the GP. However, 3 days might be long enough to see a difference.

My first child had CMPI and the difference when she got the right formula was noticeable within 24 hours. I suppose it depends what the symptoms are though as to how quickly they will improve or otherwise.

I would see if the HV will intervene to get more

What have you been prescribed, Nutrimagen or Neocate? If Nutrimagen you could just buy a tub yourself, you shouldn’t have to but might be easier than battling with the GP. That should buy you an extra few days to see whether symptoms improve and then argue to keep getting it prescribed.

If Neocate then it’s a lot more expensive, which is exactly why GP hesitate before prescribing it...

If I were you I’d print the nice guidelines and take them in with highlighted bits.

Good luck.

The OP is right though -orderjng in at the pharmacy can take 24-48 hours byw hich time OP will have had to resume unmodified formula unless she can afford to purchase an additional tin of hypoallegenic.

Although Nutramogen won't work for all babies. Depends how severe the intollerance is.

Thank you. Yeah I agree three days may be ok to notice a difference however by time I get from gp and then wait 24hrs for chemist to get in stock, it would mean I would have to order a prescription after just 24 hours to ensure I don't run out. If that makes sense.
It's made me scared to start it. I have hv Monday next for her six week check them gp Thursday next week for the six week check so don't know whether to wait. I just feel quite let down for some reason.. Prob my hormones.

Sorry it's the nutramagen (sp) one. Didn't know u could buy it..? That's an idea. But then would still have the gp battle after I expect.. Tbh the gp was a bit dim and was like oh, which one did hv reckon I should prescribe.. I said I don't know you're the gp, not her.. I fact it was a community health nurse that told me to see gp it as the regular hv there was unsure

My mother, who is skeptical about CAM, had a similar problem with me, I was severely allergic to cows milk protein (having convulsions etc) following an GI infection aged 9months. She tried a lot of things then a nurse suggested a homeopath- I was treated for 6 weeks I’ve been drinking cows milk and associated cows milk products with no issue, I’m now 38.

I’m not saying homeopathy is this magical thing, but it did work for me!

Good luck x

Can you see a different GP?

If you can afford it I would just buy another tub of Nutrimagen, then you have two which gives you a bit more time to trial it and go back to the GP and insist on a prescription for more.

Nutrimagen is fine for most babies with CMPA, but if no improvement then baby might need Neocate instead.

We're on neocate and have been for nearly two years. The pharmacy/prescription is a pita. We've had issues of running out so many times, what your pharmacy can and should do when you run out (& have a prescription) is ring around other pharmacies and find out who has some in stock. Then the pharmacy that has it in stock can prescribe your prescription. The next time you get a prescription it will go back to the original pharmacy. I hope that makes sense. Make sure when you run out that you get a prescription asap, tell them it's urgent as your baby has no milk and you need the prescription asap, don't accept waiting for two days. Do not buy the milk, it's a fortune and you shouldn't have to!

Another option if you get your prescription early in the day is that the pharmacy can add it to their next order arriving that day, my pharmacy has two deliveries, one morning and one late afternoon.

If you're going to run out in 3 days then go back after 1 day for another prescription and you should be fine. These places can get things quickly if you let them know your situation.

I do wonder if your GP is asking you to give it only three days because he will try you with neocate/another alternative if it doesn't work? Do you think that's an option? We had nutramigen for a week and noticed a slight improvement then my son got bad again. On neocate he was a different child after a week.

I hope that all makes sense! I've found most pharmacies do all they can to get my son the milk.