Milk protein intolerance - where can I buy hydrolyzed casein formula?? (whatever that is!!!!)

[Janus]

Just seen the GP today as I think my nearly one year old has a problem with milk, she has had diarrhea for nearly 2 months, on off but mostly on! Had stools sample tested but negative so he is now thinking milk intolerance.
He suggested trying a formula not made from cows milk but we couldn't get any further as he couldn't think of the name and I have been into Boots today and they didn't know what on earth I was talking about!
Anyone had anything similar that they can disucss with me (ie what do I need to do now - cut out all diary, eg yogurts, butter, cheese) and also what formula I can use??
Would so appreciate someone's help.
Many thanks.

You could try soya formulas. There are loads so if she doesn't like 1 you can try another.
Look on Channel Five's news website. They did a report a while back about this milk and it is either guernsey or jersy milk which you need. It is still cows milk but the proteins in it are similar to human milk so should be better.

I'm so confused as I thought you tried soya formulas 'as a last resort', something to do with not enough protein or vitamins?? I would have tried it earlier but sure I've heard this before??

There are several hypoallergenic formulas.

Nutramigen, neocate, pepti junior and pregestimil (sp?) are a few brand names.

They are very expensive so i would get your GP to prescribe one of them.

Soya formula will have enough protein and vitamins, but it is not recommended because it has high sugar levels so is bad for teeth, dairy allergic children are quite likely to also be allergic to soya and also it contains hormones which can affect fertility in boys.

you should be able to get it prescribed from your GP.

My DD is on neocate which you can buy over the counter BTW but is £30 a tin my chemist told me!!

We did try soya formula first (also on prescription) but she was intolerant to that too so then switched to neocate.

I do have to warn you though that they don't taste/smell very nice so if you do put your LO on it and they don't like it you can mix it with nequik or crusha and gradually reduce amount and up the formula iyswim.

Simpson, it's £38 per tin, I had to buy some last year!

On the cutting out all dairy yes you will need to do it.

It would also be advisable to go easy on soya products as there could be a chance there is a problem there too

We went dairy free when my DD was 10mths old (she is now 15mths) so will answer any questions you have..

OMG!! Its gone up in 7mths

When DD was first put on it I asked the chemist how much it would be to buy but as I said thats 7mths ago now...

Janus - the tins are tiny too not the size of a large formula tin more like the smaller tins you can buy of normal ff iyswim

Oh wow, thanks so much, I will ring GP tomorrow and suggest one of those, does any taste any better than the other or all pretty bad?!
OK, so I'm being really thick here, but what is a dairy free diet then? I assume no butter on toast, roast potatoes cooked in butter (but assume olive oil is OK?), no white sauces, any yogurts (ie have you tried soya yogurts or are they likely to affect her too?). What about all the baby 'finger foods' like Ruskits, rusks, etc. I assume I will just have to scan packets and get used to looking at ingredients. However, I doubt they say 'contains milk', is there some other ingredient that would affect her because I have noticed if I give her some jar food that usually sets her off too, although it doesn't mention milk in ingredients. I assume also all cheese is off or can I give her something like parmesan (why do I think that's not cows milk?).
I suppose she does like pasta and sauces so as long as I avoid cooking the sauce with butter it should be ok?
Is there something obvious I should give up that I can't think of?
Sorry, Simson, also, is nesquik the chocolate drink powder stuff and do you just add a little amount rather than recommended amount?
Finally, do all chemists stock something like the neocate or do they order it in and you pick it up a few days later?
I really want to start her going on this because she is also crying for suck big chunks of the day and I suppose I'm hoping it will make her be a bit happier.
Thanks so much for all the replies, it really is a huge help for me.

DD's neocate is ordered in for her and takes a few days TBH...

Have quickly scanned an old packet of rusks which look ok no milk products in them but made in factory which makes milk products iyswim but I know my DD would be ok on.

Sainsburys have a fab free from range to look at...

Marg wise use pure spread go for the soya and dairy free one which is in a green tub I think.

Baby food jar wise DD still eats the banana rice pudding hipp organic jar which is dairy free and a lifesaver for pudding TBH.

Have got leaflets from DD's dietician...will dig them out as it gives other names for milk in ingredients iyswim..

Also watch biscuits as they can have milk in too

On the crusha/nesquik thing someone may be able to offer more advice as my DD loved neocate from day 1

AFAIK pepti junior is supposed to be the most palatable.

Nesquick is milkshake powder and somes inother flavours other than chocolate. It'll probably take a bit of experimenting to get a level your DC will take and then start reducing it.

Dairy free means no butter, no milk, no cheese, no yoghurt etc. You also have to watch out for ingredients in things like whey and casein.

Pure spread is a good substitute for butter.

Oat milk (Oatly) makes a good white sauce and is the best substitute for milk in tea and coffee. Oatly also do a fab cream substitute.

You could try her on soya yoghurt, but I would try not to give too much soya as my DS developed a soya allergy after giving too much of it. I would use other substitutes as much as possible for milk and butter and save soya for only in yoghurts and ice cream.

Cheese is almost impossible, the substitutes are pretty vile although tofutti do a good soya cream cheese.

Swedish Glace do a nice soya ice cream that is widely available.

HTH

If your DD has a problem with soya then you need to be careful which bread you get too as most bread has soya flour in it

rice milk is fab for cooking with.

Janus Cow & Gate have a few products that have no milk or egg in. In terms of jars quite a few that you wouldn't expect have milk powder in but there are some Organix and Plum Baby Food ones that don't. Also I've found Frutupura (again C&G) a goiod substitute for having a yoghurt at the end of a meal.

Also agree with others here that you should try and get the formula on prescription. DD has Nutramigen 1. The chemist usually have a supply in but occasionally I have to wait a day for it.

Cow and gate pepti ( not pepti junior which is different-very confusing but I think they are working on a rebranding) is the most palatable of the hydrolysates as it contains some lactose while most of the others are glucose syrup. Obviously not suitable for children with lactose itol.

when you say stools were clear was this clear for infection or sugars (often referd to as reducing substances)? Sugars in stools difficult to test for as sample needs to be fresh.
At nearly one you may have a struggle getting DD to accept it.Try mixing it with her normal milk gradually incresing the proportion of the new formula over a few days while she gets used to the taste.

To differentiate between cows milk protein allergy or lactose intolerance which is very common after gastroenteriitis, try exculding all milk, then try hard cheese. Cheese is just milk protein and fat with almost all the lactose removed.
If she gets diarrhoea with cheese it is likley cows milk protein causing the problem. If OK on cheese but not liquid mik most probably lactose intolerance and you may get away with a reduced lactose milk.
SMA LF and Enfamil LF are both cows milk protein based but with the lactose replace by glucose. Both more palatable than hydrolysates.

Janus, all food has to be labelled as contains milk if it does legally just like they have to state about nuts.
Am having to do this again as ds who had a milk allergy and appeared to out grow it has had it triggered off again by the winter vomiting bug. It appears that he also can't handle soya either so it's back to the docs for us. Good tips about the nestle flavouring tho, will be trying that out x