Help with milk allergy in baby

alm721

Firstly apologies if this is in the wrong place but I could really do with some advice. We've just found out that our 6 moth old is allergic to the protein in cows milk. We keep being given different advice from the doctors and the health vistor. One doctor and 1 health visitor said to give hime soy formula. Another 2 health visitors have said not to give him soy as it has been found that it can have long term effects on the reproductive system (especially in boys) and is also full of sugar. We have therefore been given a hypoallergenic milk called nutramigen on prescription which smells vile and which he hates. This is not as yet a major problem as I am still breastfeeding but am finding it very tedious trying to express milk for his breakfast ceral etc as I've never been very good at expressing.
Have also been not to give him any dairy at all, obviously, but have then been told not to give soy replacements for same reason given above. No-one has given me any alternatives to replace the missing dairy, I've just been told not to give him any. I've asked for an appointment with the dietician but you have to be refered by the doctor who said I don't need an appointment with the dietician as I just have to cut out all dairy?
This just does'nt seem right to me and I'm worried about how I will get enough fat into his diet. Up to now I've been giving him fruit/vegetables that I've done myself and I've just tried him with chicken but hes not very keen so I'm worring about his protein intake too. If anyone has any advice, can point me in the right direction or has any ideas for replacment foods I'd be so grateful.
Thanks

Mrs_B_12

Insist you have a referral to a dietician, you should never cut out dairy from your diet, especially as a feeding mother, without proper advice.

There is a useful forum at https://www.babyworld.co.uk for allergies. My son is allergic to milk and we found out when he was 4 months old. Unfortunatly I didn't get referred to the dietician, just my son when he was a bit older so no one thought about my breastmilk affecting him. My GP put him onto soya milk, dieticians don't recommend it now because it's possible that kids with allergies are also allergic to soya, but the dietician kept him on it because he was nearly a year and drank it happily and still does.

The info on the reproductive system isn't proven and is unlikely to cause any harm in boys having even several drinks a day of soya milk, it would take huge quantities to have any problems.

We replaced our normal dairy spread with a non dairy one, we use sunflower Pure spread which you can get from most supermarkets, M & S do a dairy free sunflower spread too.

We buy soya yoghurts but we only got those as he got older, he's 4 now. When he was smaller I made him lots of good desserts from formula milk and old fashioned custard powder, the stuff that comes in little pots, not the instant stuff you need to check the labels. I would make up a pint of that and add different things for variety. Cook up fruit and add some to it, jelly is a good one for making a blancmange type pudding if you add that to the custard when it is hot and mix well. Cocoa powder, not too much it's strong added to the custard and there are probably more that I can't think of righ tnow.

[Deleted User]

You have my sympathies, Nutramigen tastes truely awful and I am not suprised your lad doesn't like it. Our son had it from 11 weeks, having been through 7 different milks prior to that and my HV said up until 3 months, they will usually take to it, but after that their taste buds have matured and its really difficult to get down. Fortunately our son took to it and got used to it, but at 6 months we noticed he was drinkinig and drinking less until by 7-8 months he was on less than 10 oz a day. We tried him on regular formula and not looked back since. He didn't have an allergy just very bad reflux that went once he could sit up.

However this doesn't solve your problem. My HV gave me some recipie sheets of things I could make with Nutramigen, but I never got around to using them. Maybe you could ask your HV for these sheets, if not, let me know and I could post mine to you, I was only going to take them back to the clinic, but kept forgetting.

I am sorry but I don't feel qualified to offer any advice on diet etc, but maybe someone else here could.

We did see a dietician with our son, but once the appointment finally came around, the problems we had were resolving themselves.

Good luck.

thinkginge

this is going to be a long post, so apoligies in advance..

i think i can help you, my son has allergic enteropathy, bile reflux(from bowel), multiple external allergies and eczema. the allergic enteropathy is rare, and im no way saying your baby has this. allergic enteropathy means my sons bowel is basically allergic to all foods, but mainly the worst is soya, gluten, wheat, dairy, additives and veg and fruit.

hes 3 now and i knew from day one my son wasn't a "normal" baby, the signs to look for if it is allergy is constant crying, im not talking normal baby crying im talking 8 HOURS A DAY CRYING. also if its dairy CONSTANT DIAHERREA.

my sons quite an extreme case, ive never met anybody else with allergic enteropathy and neither have his doctors! thats a big problem!

when my son was a year, i literally sat in a & e and refused to go anywhere until they told me what was wrong with him, last october we were admitted for total food removal diet, literally no food for 2 weeks then try and introduce with the least allergenic foods possible, ie potato, rice, carrot and chicken.

my son reacted with them all severly except the chicken. he was then taken off food and placed on NEOCATE ADVANCE, this is a hypo allergenic food/milk replacement made in a lab, this is nutricionally complete. my son ended up on tube feeding and was in hospital for 3 months.

we're in abit of a better position now, my son was actually scared of food, but with play therapy we're getting there.

my advice to you is do not take the doctors/dieticians word for it RESEARCH. Talk to your doctor about neocate advance, it comes in three flavours, banana, strawberry and normal. do not cut out all dairy, but do it one thing at a time, it may be he is allergic to milk, but not cheese or yoghurt. do a two week trial of each food restriction and WRITE EVERYTHING HE EATS DRINKS IN A DIARY WITH XPLECIT DAILY BREAKDOWNS. ie what nappies are like etc.

this is the only way, you'll be able to tell if its dairy.

i hope this helps, if you need any more advice please pm me and i'll happily reply

alm721

Mrs_B wrote: »

Insist you have a referral to a dietician, you should never cut out dairy from your diet, especially as a feeding mother, without proper advice.

There is a useful forum at www.babyworld.co.uk for allergies. My son is allergic to milk and we found out when he was 4 months old. Unfortunatly I didn't get referred to the dietician, just my son when he was a bit older so no one thought about my breastmilk affecting him. My GP put him onto soya milk, dieticians don't recommend it now because it's possible that kids with allergies are also allergic to soya, but the dietician kept him on it because he was nearly a year and drank it happily and still does.

The info on the reproductive system isn't proven and is unlikely to cause any harm in boys having even several drinks a day of soya milk, it would take huge quantities to have any problems.

We replaced our normal dairy spread with a non dairy one, we use sunflower Pure spread which you can get from most supermarkets, M & S do a dairy free sunflower spread too.

We buy soya yoghurts but we only got those as he got older, he's 4 now. When he was smaller I made him lots of good desserts from formula milk and old fashioned custard powder, the stuff that comes in little pots, not the instant stuff you need to check the labels. I would make up a pint of that and add different things for variety. Cook up fruit and add some to it, jelly is a good one for making a blancmange type pudding if you add that to the custard when it is hot and mix well. Cocoa powder, not too much it's strong added to the custard and there are probably more that I can't think of righ tnow.

Many thanks for that. I'm going to go back back to see another docotr I think and ask again for a dieticians appointment. Its not just me they wont give one to they would'nt give one to my son either. I have worked out that if I eat diary his excema flairs up so have been pretty much advioding it anyway.

Thanks for the link to babyworld, will check that out and many thanks for the food suggestions. Have found the pure spread so I can at least do some cooking with that but will now look for the other stuff you've mentioned.

I think I'm going to talk to them again about the soy milk. As I'm still breastfeeding I was really only wanting something to make up cereal and things with or for cooking with so I had thought that it wouldn't have much effect anyway.

Thanks again for replying

alm721

Deleted_User wrote: »

You have my sympathies, Nutramigen tastes truely awful and I am not suprised your lad doesn't like it. Our son had it from 11 weeks, having been through 7 different milks prior to that and my HV said up until 3 months, they will usually take to it, but after that their taste buds have matured and its really difficult to get down. Fortunately our son took to it and got used to it, but at 6 months we noticed he was drinkinig and drinking less until by 7-8 months he was on less than 10 oz a day. We tried him on regular formula and not looked back since. He didn't have an allergy just very bad reflux that went once he could sit up.

However this doesn't solve your problem. My HV gave me some recipie sheets of things I could make with Nutramigen, but I never got around to using them. Maybe you could ask your HV for these sheets, if not, let me know and I could post mine to you, I was only going to take them back to the clinic, but kept forgetting.

I am sorry but I don't feel qualified to offer any advice on diet etc, but maybe someone else here could.

We did see a dietician with our son, but once the appointment finally came around, the problems we had were resolving themselves.

Good luck.

Thanks for that, thought it was just me thinking the nutramigen was awful but I made some up for him tonight with baby rice and honestly I thought I would be sick from the smell. I usually taste his food before giving it to him if its not something I've cooked but honestly could'nt bring myself to do it. I offered him a spoonful and he opened his mouth, had a small amount, spat it out and then just cried and refused anymore, (he had apple and pear instead).
I think its going to be a bit of a non starter as he's used to breastmilk which is apparently quite sweet, so this must seem pretty dire.
Glad your sons reflux is getting better.
Regards

alm721

thinkginge wrote: »

i think i can help you, my son has allergic enteropathy, bile reflux(from bowel), multiple external allergies and eczema. the allergic enteropathy is rare, and im no way saying your baby has this. allergic enteropathy means my sons bowel is basically allergic to all foods, but mainly the worst is soya, gluten, wheat, dairy, additives and veg and fruit.

hes 3 now and i knew from day one my son wasn't a "normal" baby, the signs to look for if it is allergy is constant crying, im not talking normal baby crying im talking 8 HOURS A DAY CRYING. also if its dairy CONSTANT DIAHERREA.

my sons quite an extreme case, ive never met anybody else with allergic enteropathy and neither have his doctors! thats a big problem!

when my son was a year, i literally sat in a & e and refused to go anywhere until they told me what was wrong with him, last october we were admitted for total food removal diet, literally no food for 2 weeks then try and introduce with the least allergenic foods possible, ie potato, rice, carrot and chicken.

my son reacted with them all severly except the chicken. he was then taken off food and placed on NEOCATE ADVANCE, this is a hypo allergenic food/milk replacement made in a lab, this is nutricionally complete. my son ended up on tube feeding and was in hospital for 3 months.

we're in abit of a better position now, my son was actually scared of food, but with play therapy we're getting there.

my advice to you is do not take the doctors/dieticians word for it RESEARCH. Talk to your doctor about neocate advance, it comes in three flavours, banana, strawberry and normal. do not cut out all dairy, but do it one thing at a time, it may be he is allergic to milk, but not cheese or yoghurt. do a two week trial of each food restriction and WRITE EVERYTHING HE EATS DRINKS IN A DIARY WITH XPLECIT DAILY BREAKDOWNS. ie what nappies are like etc.

this is the only way, you'll be able to tell if its dairy.

i hope this helps, if you need any more advice please pm me and i'll happily reply

Oh my gosh:eek: I thought I had problems, sounds like you and your son have really been through it.
Thanks so much for taking the time to reply. I dont think my son is allergic to soy but have not had any testing done by the docotrs so am not 100% sure. I found he had a problem as I tried to give him a cow and gate banana surprise cereal one morning (that contained dry milk powder), until then he had previously only had fruit/veg that I did or baby rice with my milk and had been fine. Within miutes he came up in hives all around his mouth and face. I suspected it weas the milk and a couple of days later tried him with a small amount of baby rice mixed with a formula milk. Again within minutes the hives appeared. The hv told me to try dabbing his arm with cows milk to see if he reacted, he did. Within minutes there was a large red blotch with a big wheal at the centre. (he also reacted like this with goats milk and lactose free milk but not with soy). On this basis they have diagnosed him with an allergy to the protein in cows milk as apparently lactose intolerance does not cause such immediate and severe symptoms.

He has had constant diorrhea since birth but I was just told that this was becasue he was breastfed, with hindsight Im sure it was my milk because I'd had dairy, he was colicky and in pain after feeds and got into awful cycles of only feeding a bit and then being in pain so wanting to feed again for comfort which would start the colic etc.
The colic has settled as I've started weaning him, I think because he's stopped having so much milk for me and I've now realised whats happening and cut out most dairy.

Im going to try and research as much as I can as to be honest I'm not very happy that I'm being given conflicting advice by the health professionals or that they haven't really offered me any help or advice with how to deal with this.
Off to go and find out about neocate now.
Thanks again and hope you son is ok

kbh4031

Hiya,

my daughters allergy is not that serious, but if she does have dairy she is in constant pain....

My daughter was born with a cleft palate, beacuse of this she had difficulty feeding anyway. The cleft nurse gave her special teats because she thought it was wind due to suckin in extra air, these didnt wrk.
I visited the GP, Childrens hospital, paediatrician, heath visitors & dietrician nad they all had different views and advise. They gave her gaviscon, milk thickeners we tried various milks including Neocate. Nothing helped and in the meantime she screamed 90% of the day, and i was helpless, i got depressed and couldnt face being with her all day. When she was 2 mths old I put her symptoms in a google search and it came up with lactose intolerance, it was 11pm and i sent my hubby on a 10mile trip to buy some wysoy, I fed her when he got back and there was no more screamin , i was so relieved...

I have since spoke to my GP and looked it up on the internet and found no proof that soya will damage her health and even found some info that says its very good for you. Either way she is now a very healthy 15mth old.

I know its difficult to begin with, most prepacked foods have dairy added to them, but I went back to basics and cook everything from scratch and use dairy alternatives when required.
As for him not liking chicken... try this, when my eldest was younger she used to say she disliked certain things, especially eggs & tomatoes and i contiunued to give them her on her plate and when she complained id say "try a bit, you mite not like it now but you will when you are bigger" She is now 4 and loves both, infact there isnt anything she doesnt like including prune juice..urrgh. I never let on to her if i dont like something so she doesnt follow suit.

I would defo keep a food diary, thats a fab idea.

Remember you know your baby best, ive not had any helpful advice from the dietrician we had to visit monthly..in fact it was a waste of time for us. The best source of info was the internet, there are sites about living a dairy free lifestlye and the info was priceless.

Hope this helps somewhat and feel free to PM me if you want to chat about it ect...

GL with this

Kelly x