Moving on from Nutramigen

[RubySlippers77]

DTS1 is lactose intolerant and has been on Nutramigen since he was 3 months old and first diagnosed. He's almost 3 now and I think the GP wants to discontinue his prescription for it; I received a garbled message via the receptionist but of course can't get an appointment for a medication review to find out what they mean!

This time last year I was told to keep him on the Nutramigen as soya milk wasn't recommended for children under 4. Does anyone have any suggestions as to what he could move on to? He can tolerate small amounts of lactose in things, but nothing like milk/ cheese/ cream etc, just makes him sick. He loves his Nutramigen - I guess if the worst came to the worst I could buy it privately but it is £££

Could you try almond, help or coconut milk instead? Rice milk isn’t recommended for under 5s due the arnesic levels.

I’m CMPA and use almond milk for quite a few things, I made blueberry pancakes with them today. Just make sure you get a milk with added calcium

Thank you Julie! We've had some success with the other milks in things (such as baking) when he can't taste them, but if it's just drinking milk he won't have them the HV said it may be because Nutramigen has such a distinctive taste that he's also a fussy eater! Joy!

I'm trying to get a GP appointment to discuss it as they won't even give us one more lot first. Very annoying as we haven't had any warning, otherwise I'd have made an appointment in advance and started looking at other options sooner.

My relatives in Australia tell me that you can buy lactose free formula over there for pretty much the same cost as the normal stuff. No idea why you can't do that here!

Nutramigen is for cows milk protein allergy not lactose intolerance so I’m confused as to why you using it.
You can buy lactose free formula in any chemist or larger super market.

Soya milk is fine for children under 4, in fact Alpro make a specific milk for children from 1 onwards. I think you're getting mixed up with rice milk which isn't suitable for under age 4 due to the arsenic content.

He really shouldn't need Nutramigen now he's nearly 3. You could try any of the other milks apart from rice milk. My DS has oat milk.

Ageee with op who said that Nutramigen is for [[https://www.allergyuk.org/information-and-advice/conditions-and-symptoms/469-cows-milk-allergy Cow’s Milk Protein Allergy[[ (CMPA) rather than an allergy to lactose. Are you sure it’s it lactose your LO has problems with OP and not the protein? Just asking as an allergy to Lactose is pretty rare in babies.

If it is CMPA or if you’re not sure, I’d avoid Soya milk as roughly half of all people with CMPA are also allergic to Soya. I can eat sone Soya in foods but the milk makes me feel like I have the flu.

At 3 he doesn’t need milk to drink at all, I really wouldn’t worry about it. You might find that once the Nutramigen has gone and he’s had a couple of weeks without it, he’ll start drinking the alternative milk of his own accord anyway

We had this problem. First of all, try to get your GP to agree to a period of time when they prescribe it, but you start mixing it with other 'milk'. I told them it would be cruel to take a child's milk away without slowly weaning them off it. Then try to find an alternative. There are quite a few fortified milk options... almond, coconut, oat milk etc. Start mixing, slowly increasing the quantities of the alternative milk.

I was beside myself as we were totally reliant on a bottle of milk to get my two year old to sleep and I made the GP agree to a three month period in which we weaned ds off the prescribed milk... in the end, we'd cracked it within two weeks! I think ds had oat milk.

I had two children with CMPI. First was on neocate until 2. She couldn't have soya either, so she had oat milk, which she found very palatable. Second child was bf, so no need for formula but I used soya for cooking etc from 6 months and as a main drink from 18 months. I used the Alpro "Toddler" as mentioned above. In fact, I worked 2 days a week from when she was 8 months so she had this as a drink at nursery from that time.

Both of mine are completely fine with all dairy now, although they still have oat milk in cereal as they never developed a taste for cow's milk.

You can try mixing with a small amount of milkshake powder at first to get him used to it, or at 3 it isn't really an issue to have no milk, although I would maybe use a calcium supplement if he has no dairy at all, depending on what calcium he gets in the rest of his diet.

Thank you to everyone for the helpful tips

We're in the same boat, Lorelai - he loves his milk at bedtime/ nap time, it's possible that I could replace it (or try to wean him off!) but it will take time. So frustrating that they have stopped his milk with no warning and won't even do the review by phone (which they did last time) - I've asked before if we need to return to the specialist he originally saw for more help, but was told there was no need, just keep going with the Nutramigen till he's ready to give it up. Which he isn't yet - think he sees it as comforting as it's something he knows won't upset his tummy!

I'll give the Alpro toddler milk and oat milk a go anyway - there must be something he'll try.....!

When we transitioned off nutramigen (bought it ourselves from pharmacy for a few months after gp discontinued prescription...) we gradually mixed it with an alternative over a week or two and it worked surprisingly well - I was convinced she’d never drink anything else! Oatly barista is brilliant - long life as well, so lasts 5 days once open but the unopened attains have about a year’s shelf life. Most big (and actually plenty of small) supermarkets stock it. Fortified with calcium etc so a really good alternative to cows milk.

Are you under a dietitian? We were under a dietitian and they recommended we go from nutramagin to oatly
Can't remember the exact reasons why but she went through all the different milks with me and it was to do with the levels of calcium, fat and vitamins and which had the right levels.
My son is now 5 and the whole house now drinks oatly. Can't reccomend enough !

Oatly sounds like a good option, thanks to everyone for the suggestion!

We don't have a dietician but we did see a paediatrician originally to go through the issues, when DTS1 was about 6 months old. She said stick with the Nutramigen till he was 2, try introducing small amounts of cows' milk into his diet, and review it at 2. He wasn't any more tolerant at 2, hence they gave us another year of prescription milk.

DP can't tolerate dairy either (I'm assuming it's lactose rather than CMPA - as he's not technically allergic, it just makes him sick?) so the paediatrician did say DTS1 may not grow out of it although many children do.

The GP has approved his prescriptions for another few months (thank goodness!!) to give us time to transition off his current milk

I think it would be useful to get clarification on the diagnosis of whether it’s lactose or cows milk protein allergy as they are very different. Can your HV refer to a dietitian?

DP can't tolerate dairy either (I'm assuming it's lactose rather than CMPA - as he's not technically allergic, it just makes him sick I agree that I think you need clarification on whether is Lactose or Cow’s Milk Protein that’s causing the problem OP. There’s more information on CMPA here. The symptoms you describe do not rule out CMPA at all