BabyWhispererForums.com
EAT => Food Allergies => Topic started by: ~Emma~ on May 05, 2011, 08:26:10 am
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Finally starting a dairy free trial. Going to do it for a couple of months to see if it xcears up her skin and poops.
So, i am very overwhelmed to say the least. I am figuring I will have to wean her on to the formula as it will probably be rank. My main concern is solids. I home-make most of them using Annabel Karmel (useless in the kitchen...NEED to follow a recipe even for baby food!). What do I do about things that for example have veg saute'd in butter. Can I just use oil?
And for her cereal in the morning. Do I just use the formula or is there some kind of milk I can buy that she can have? Silly questions and there will be a TON more.
NOw that I am doing it I wish I had done it sooner, Now I have to cut out dairy in my diet and hers, it would have been alot simpler to do it with just mine. :-\
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hugs, Emma. I'm sure the other ladies have much more tips to share but in general, saute'ing can be done with oil. Butter adds flavours. There are tonnes of alternatives for milk, eg, soy milk, rice milk, almond milk. I won't offer more tips as I haven't really done it myself. xx
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lots of hugs
we use pure sunflower spread for baking, etc and oat milk (oatly red writing on carton, with added calcium) - most food turns out fine+tastes fine. Big Tescos stock Oatly (organic one doesnt have calcium).
We started Murray on Neocate when old and he hated it,so mixed in with fruit as smoothie .... now he LOVES the milk by itself
Labels are easy to see now if contain dairy as it is always in the allergy info box (Jammie Dodgers may contain traces of milk, one of few biccies that don't include milk!!). Most flavours of crisps contain milk :(
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huge hugs Emma,
so sorry you're going through this xxx
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Hi Emma, I think the key is get yourself stocked up on all the DF alternatives. Are you going soy free too?
Butter and milk are the 2 biggies but both have loads of alternatives readily available. Cheese is the other one and that is much harder to replace. I didn't bother TBH.
Luckily in the UK allergy labelling is good now so easy to find if products contain milk.
There is a sticky with foods that have been recommended. Also a sticky with some meal plans and recipes.
You can use formula in cooking - no probs. Might be a good idea as another way to introduce the taste.
You can fry in oil or DF marg.
Keep them Qs coming. There are loads of threads in this forum from Mums trying this for the first time that you may find useful.
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I am FURIOUS, absolutely FURIOUS.
So just been gearing myself up for this for the past 2 days. I go to the GP office to pick up the formula and the receptionist tells me that the GP didn't actually think I should have it and gave me a number for the HV. (I had said in my other thread that he was dismissive and couldn't get me out quick enough) The little weasel didn't even have the audacity to say it to my face. I am so angry.
I went through this with B's reflux, back and forth, sleepless nights, being made to feel like an idiot. And now that this is happening I realise that this was the reason I prob put this off for so long ( that and my love for cheese!)
SO I rang the HV ranting and raving and she said she cant come out until next week. I was very upset and told her tomorrow is the latest I want to see someone. They are coming tomorrow morning.
I feel very bogged down by all of this. It doesn't help that I am not sure myself, all I want is a dairy free trial for a couple of months to rule it out.
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How annoying!! I forgot to mention in last post that Oliver has NEocate for if I need formula and drinks it absolutely fine. I had a phone appointment with one of the doctors and just asked her to prescribe it as a standby for me as I felt he was having problems with dairy and DS1 is dairy free and takes Neocate - she just asked me to spell it and wrote out prescription. Phone and get an appointment with a different doctor in the practice. I am not sure if a HV can prescribe?
Just be confidence saying that you are pretty sure she is having problems and are going dairy free to confirm, and would like Neocate to ensure calcium, etc. Ready Brek has almost full calcium allowance for the day if it is a big bowlful. We got referral to paed by doctor as Murray always had dodgy tummy (they were useless but did refer us to dietician who gave ideas of calcium, etc). She said when we were there this week that ALL children should have vitamins even if on good diet and recommended Abidec (smells odd but Murray takes in - mind you, he likes raw onion, etc!!)
Re cheese - I LOVE(d) cheese too - after a month or so without it I really don't miss it any more and don't like the thought of eating it for some reason (sure that will go once I eat it again). Once it is out your system it does seem to get rid of the craving.
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Emma, I'm sure there are some great HV's out there but I've not come accross one who has any real idea about reflux/allergies/intolerances - I really think you need to call your surgery and ask the Gp to refer you to a paediatrician. They should refer you no problem, and if not then I think you need to see another GP and ask them. It is fair enough for a GP to not prescribe something they do not feel comfortable with (although the manner in which yours did it is pretty rough) - but it is NOT ok for them to not refer you on if you feel like there is an ongoing issue that they are not able to help you with. They really need to refer you to someone with more expertise ((((((()))))).
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{{{{{{hugs}}}}}} Emma and grrrrrrrr to your stupid dr and HV :( I"m on week 4 of dairy free and finding it easier than I imagined. I do miss the cheese though. We use almond milk and coconut milk mostly and yes, I do cook with it without any trouble. I sautee usually in olive oil or dairy free "butter" (but that's a bit pricey, so I don't use it too much), I've also heard that coconut oil is awesome as a butter replacement in cooking, but I've not tried it yet. Check out the stickies on the forum, loads of good info - especially on "hidden" dairy - because it's in all kinds of things I didn't expect! Good luck!!
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I am so sorry you have been treated like that. If your lo was a little older I would give you the neocate advance we have left so you could start your trial. Having said that we live near Manchester so would probably cost a fortune getting it to you, unless you had family or friends in this direction that could bring it to you. I hope your HV is helpful and is able to get the formula prescribed.
Kelly x
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Shocking! I am so sorry. Hopefully your HV will be more understanding. Just really play up the symptoms - they can't deny you HAF surely??
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I know in the US if you contact the company who make neocate they will send samples out. It might be worth finding out if they do that in the UK. I really hope the HV works this out for you. It will ultimately come down to cost these kid of things do but that is o reason to refuse the prescription. If it is dairy that is causing your lo's problems then they are refusing her the quality of life she deserves by not giving you a prescription for it. At this point they should be willinng to prescribe enough formula to give it a trial because your lo deserves this chance.
Kelly
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Well all I want is the chance. I mean I'm not even sure myself if this is the case here but a couple of months ruling it out would mean we could move forward kwim.
Its really hard to push her case when I dont even know that much about and the fact that I am not sure means I get pushed away. I feel the medical professionals should be the ones wanting to get to the bottom of it too.
This is the last place I wanted to be, pushing and pushing.
Thing is the last 2 nights have been fabulous (well by her standards!) and her nappies have been ok aside from a little constiaption). I have been only giving her plain fuit and veg for solids though and ditched that 2nd bottle of formula for the time being. Coincidence?
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I don't think that its a coincidence to be honest but that is just my opinion of course. It is possible that your lo does not have a dairy issue but it would be good to know one way or the other.
Kelly x
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I feel the medical professionals should be the ones wanting to get to the bottom of it too.
You probably know about all the issues we had with food with Murray which we have only recently figured out - we were referred to paed and dietician but neither actually helped us find out the issues, just gave advice about how to go dairy free. I feel that apart from the initial information about hidden dairy etc the appointments are for their benefit and they just listen to what we are saying and check he isn't getting malnourished.
I think that the increase in formula sounds like it could be dairy. I would say something like "I am pretty sure Dylan has a dairy intolerance because she was gassy as a baby, and since increasing her dairy formula her nappies have been loose, etc etc, and I would like to do a dairy free trial to see. I thought she had a dairy intolerence as a baby but feel more certain now. I would like Neocate for a trial period so that I can ensure she is getting enough calcium and other nutrients. I am going to do a dairy free trial for 3 months (for example) then we can see how she is getting on. Please can you refer me to a dietician/paed for more support". Just sound confident and don't let them faff you about. It's just for a trial to either confirm or dismiss your instinct.
Fingers crossed. I can't see why they wont prescribe as you could always go dairy free and just not give her formula which would be worse.
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(((hugs))) Emma
I have been here too. Went to GP when DS was 4months, as reflux was continuing & he had eczema & facial rashes. At the time he said it could be milk intolerance but that they didnt usually do anything except just wait for LO's to grow out of it. I listened to others who said DS was just a fussy baby for several months, then finally plucked up the courage to go back to the GP as since starting solids his reflux & rashes have just gotten worse. He was reasonably understanding, but I had huge difficulty actually getting a prescription, as he is clearly not well informed about reflux/intolerances and wanted me to put DS on Soy milk. I said no so he asked me to see the HV & for them to decide which formula he should prescribe me. HV was clueless too, told me to ask a pharmacist, who said DS just had wind & I should burp him better (the cheek!!!). I think a lot of health professionals are just ignorant about intolerance issues & dismiss it as wind, fussy baby etc, but they are not the ones living with a baby who is suffering.
I finally got hypoallergenic milk - Aptamil Pepti - as I went back to the GP & specifically asked for that brand. No-one has checked it is actually suitable for him at all, but at least its enabled us to start a dairy free trial.
His skin rashes have all but gone, his eczema & cradle cap is clearing & he's still a bit sick but not as much. We ran out of the formula & had to use the old stuff & it all flared up again. So its proven to me that he's dairy intolerant.
I guess all I am saying is stick to your guns. You know your LO better than anyone else, if you feel there is something wrong, go back to your GP again, or like pp's have said, ask to see another GP or for a referral to a paediatrician. I have actually done this too, even though I have the HA formula already, just to make sure DS is given reflux meds if needed & that we are giving the right diet to ensure he gets his calcium requirements.
As for cooking AK recipes - I use her books too - & use 'Pure' sunflower spread - its dairy free & you can get it in Morrisons & I'd guess some other larger supermarkets. We've also got some 'Oatly' oat milk - its in supermarket with the long life milk - (Tesco sell it). Not used it in cooking yet but hear its fine. I make up extra formula to put on his cereal & just add some fruit puree to sweeten it up as its quite bitter.
HTH.xx
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Hi Emma how are things going? Any joy with the HV? There is another post at the mo about a GP referring to the HV without prescribing HAF. Odd. My GP referred us straight to the hospital!
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Hi Emma how are things going?
Rubbish! Long, gassy NW's and bad skin back.
There is another post at the mo about a GP referring to the HV without prescribing HAF.
This is me. So pee'd off. HV was useless but she can get me a referral to the dietician but has asked that I give it another week. She wanted me to CIO for NW as she thinks D is waking as somehow I am encouraging it. >:( She basically thinks there is no correlation between her diet, her skin, her gas and her nappies.
Just so despondant about it all.
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So no one is prescribing HAF?? I have some unopened Nutramigen in the cupboard if you want me to send it to you? The trouble with intolerances is that actually you can't do anything but take out the offending foods.
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AH it was Shiv...
http://babywhispererforums.com/index.php?topic=209913.0
SOunds like you are at the same stage. Some info on there you may find useful about taking dairy out x
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Thanks so much lovely. That is so kind. I am going to wait and see what gives this week. I am just adding dairy to her diet against my better judgement but the HV and GP both seem to think allergies are not at play. I will however be taking her back to see a different GP if things are still the same or worse next week, I was thinking of taking that referral anyways just to see what she says...
Posted at the same time...yep Shiv and I are in the same boat....
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Are you adding the dairy to see if she gets worse?? Just re-read the thread and thought you were giving dairy free a go! The offer is there for when/if you are ready but the expiry date is July 11!
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Whats the point in me giving dairy free a go if she still has the formula though? I'll never know if dairy is the issue if she still has it in her formula kwim?
I was made to feel like an over wraught mother just out for a good nights sleep. The HV made out like it was all in my head despite me listing her symptoms off several times. I feel very let down by the health service.
I have had the worst week with it. :'( I dont know where else I am supposed to go with it.
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Of course, sorry Hun. What a pickle. If your mothers instinct tells you it is MPI then let me send you the HAF. a couple of weeks should give some answers.
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Dont be sorry lovely. :-*
I think I am going to ring tomorrow to get a referral. It cant hurt right?
I know this sounds awful but its just dealing with the frustration of no-one listening to you. I feel the GP's etc should want the best and listen to parents valid points and not fob them off. My GP practice received a very cr@ppy complaint letter!
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Hugs lovely xxx
What is the craic with GP's referring you to the HV so they can talk to you and then refer you back to GP to get a referral to paed and dietician? Essentially what happened to me today. Just stalling. To be fair though my GP did admit it was more than definately dairy intolerance. Just no follow through.
There is a really good post on here about symptoms of food intolerance. I had it written out and highlighted R's symptoms and also had a rough food plan and symptoms for the last few weeks that showed a clear correlation between milk products and R's symptoms. Maybe being very firm would help.
If the HV tries to stall me further I'm going straight back to GP to get referral for help with the diet.
I have some unopened Nutramigen in the cupboard if you want me to send it to you? The trouble with intolerances is that actually you can't do anything but take out the offending foods
You could try this! Means you could take milk out of her diet in terms of solids and give her this formula and then you would know, You'd have to not BF though if you weren't dairy free. Or are you not quite there yet?
I just keep thinking about R's wee gut being all annoyed and irritated and I feel so guilty.
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oh Emma!!!!! I'm so sorry you're totally not being listened to. If you were close, I'd send you to my ped - she's amazing. I wish you could just get your gp or your hv to just listen to you. I'd try the d/f formula and go dairy free and see if that helps. {{{{{{hugs}}}}}}
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Stick to your guns Emma.
I got sent around in circles by my GP - he was receptive but wouldn't prescribe without HV deciding which milk - HV wouldn't do that - sent me to see a pharmacist - he said wind - so I went back to GP & said I want this brand of milk & luckily he gave it no problems. No one seems to want to offer help to mums & LO's with these sorts of issues - I too felt like we were being given the brush off & I was made to feel like a neurotic mother who was imagining it all. But no, now we are dairy free, I can clearly see improvements in my LO. I would insist on that referral. & I'd also try the dairy free formula just to see if it makes a difference.xx
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I did get very frustrated with the HV and explained to her that I could essentially get the formula anyways and go ahead myself (I think you can get neocate online....). SHe said that would be foolish to do it without supervision. Again making me feel like an idiot and cornering me.
So yesterday she had no hardly any dairy in her diet apart from the formula. Just veggies and fruit for meals. She sttn, well one farty waking. The day before that she had some cauli cheese and a tast of fromage frais and she was up ALL NIGHT. There is no consistancy with her though which makes me question it. I wasnt questioning it yesterday when she had been up all of the night before and a mess all day yesterday ( and not just from the tiredness is my gut feeling) but I question it today when she had an OK night last night.
I am going to ring today for that referral. Wish me luck.
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Good luck xx
Let me know how you get on x
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Good Luck, I hope they give yo the referral .
Kelly x
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Good luck with referral - remember that she may be fine with some dairy and not with others (I am fine with all, apart from cold cows milk). We are now re-trialling dairy with Murray and so far he has been fine with all .... so it's either just cold cows milk, like me, or he has outgrown it ???
Not sure if/where I posted about my referral but basically (sorry for no doubt repeating) that basically a referral will help you ensure meeting nutrients etc but wont help THAT much with diagnosis, basically will prob suggest going dairy free for a while, then introduce 1 item at a time .... I have some leaflets I can photocopy and post (or attempt to email) with dairy free calcium sources etc
Good luck x
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Thanks hon. Rang on fri but HV wasnt around and she didn't call back. Will try again tomorrow.
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We got referral through our GP (HV just knows what is happening by me updating her)
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Emma, I've just read this whole thread and OMG, how very, very frustrating for you, upsetting and plain ridiculous. It'll be the GP who refers you to a Paed won't it, not the HV (maybe it is different in Scotland).
I remember going through this being fobbed off by well meaning GPs (not that yours is well meaning, he/she sounds like an **se) and so many times I got an appointment in order to get things sorted and it always ended up with being fobbed off. In the end I got an appointment with the GP and rehearsed over and over in my head what I was going to say.....I essentially said it like it was for me "this is difficult for me to essentially challenge your medical opinion, but I am so, so fed up of knowing there is something amiss with my child and feeling repeatidly ignored and dismissed, I am telling you I want and expect a referral to a Paed" I rehearsed it over and over before I went in.
It was miraculous, I thought I'd have a battle on my hands and he just rolled over and said 'ok'. Be strong and insist, it is your right and that is why you and all the rest of us pay our taxes. We did have to wait quite some time for our referral to come through tho, so that offer from BBear is very tempting. I was so so scared of cutting out the dairy (I ended up doing it myself because I just knew the reflux was caused by 'something'), we have never looked back and I have a very settled boy now in terms of nappies being normal and no more puke or wierd rough skin..... I felt for so long that I should follow the advice of my HV and GP but what a complete waste that was - they tried and meant well but they were next to useless if I'm honest. It was my instinct that led to us dropping the dairy from H's diet, not the GP, HV or Paed! The Paed prescribed drugs for the reflux which 'managed' things to a tolerable level but no mention was ever made of dropping dairy.....Happy to talk more if you want. Good luck tomorrow - can you take hubby or a friend with you to the GP to show united front? Sometimes that makes them sit up and listen?
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Thankyou for your support and input ladies.
I have just had enough. My head is all over the place with it. So after feeling like a maniac mother by both my GP and HV I just went ahead and intro'd the second bottle of formula and have not restricted her diet or mine in terms of dairy or anything else.
She has been up every 3 hours at night. Very, very constipated. Her skin has gone down now but 2 days ago flared really bad despite using meds for it. I'll try to post the pics and you can give me your opinion.
I spoke to my HV again who said I need to try a casein based formula instead of a whey based formula. That is hungry baby milk' basically. I said she is not a hungry baby and already constipated ( I know hungry bub formulas can cause constipation in babies). She then said that it might help her go longer stretches at night though......
ARGHHHHHHHHHH.....
Why is she not listening to me? I am not even hardly feeding her at night anymore. Hunger is NOT the issue!
I am so frustrated. I am now waiting to hear back from a dietician that I insisted my HV refer me to. That could take well over a week and now I am in the midst of a nightmare not knowing what the hell it is causing her upset. She has eaten so many new food over the past week it could be bloody anything. I am so upset that I had my confidence shaken by these people to the detriment of my baby.
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I spoke to my HV again who said I need to try a casein based formula instead of a whey based formula.
That would work if it is the whey part of the cows milk that is the problem (I think that is my issue as I think whey proteins are mainly destroyed when heating milk over 72c). If it is any other issue then it wont work.
To be honest, I would do what you think is best, regardless of what the "professionals" say, I am assuming you are sensible enough to know what I mean! The dietician will help you ensure you are meeting her dietary needs if you are going dairy free, but probably wont help with diagnosing what part of dairy upsets her, apart from showing you how to do a dairy free trial and how to reintroduce food.
I overheard someone today saying her grandaughter constantly has a cold and can't sleep for it and the doctor keeps saying there is nothing he can do ... if was quieter I would have suggested to her about dairy! Just shows how widespread intolerence issues are ignored!
From what you have written it does seem that dairy could be the issue. Remember some countries hardly eat any dairy and are fine! Maybe if you are going dairy free more or less one bottle of formula would be okay? But, just remembered, it was actually dietician who gave us Neocate samples then got doctor to prescribe it, then just phoned for repeat prescription, so if you dietician agrees you don't need to speak to the doctor at all!!
Hugs xxx
ps. mother's instinct is a great thing - doctors will eventually listen but sadly not always first time
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Are you doing soy free as well?
I've got a tin of SMA soy milk if you want it and I can also send over a tin of neocate if you want - I've got it on repeat prescription so I can always get more!
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casein is the actual milk protein, so if that's her intolerance issue, switching to a casein based formula could actually make things worse :(
{{{{{hugs}}}}}} Emma - I wish I had more to offer!!
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{{{hugs}}} Emma. How frustrating no one (but us ;) ) is listening. Yeah, CIO will clear up those gassy babies ::)
While I am no expert on the matter, I would really stop as much dairy as you can (all but in formula) and keep a strict diary on what she is eating and what the day looks like. With the hard evidence, you may be able to convince your medical people (HV, GP, whoever),that there is a correlation. If you keep trying the dairy, you are getting nowhere and poor little one is suffering through all the changes.
Many more {{hugs}}
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Thinking back - I just told doctor I knew he has problems with dairy (Murray, not the dr!!) but wasn't sure about other foods so wanted help. Paed did stool sample test but it came back negative (dr google says though that sample needs to reach lab in an hour or so, which obviously didn't happen) but I know it is the cows milk that is the issue. We stopped cows milk when Murray had ear infections and when we re-started his nose got really snotty again. Doctor seemed to accept this as "evidence" - so just sound confident and say you are "sure" she has issues and want advice on how to do it. Don't let them fob you off (Agree with pp about taking someone to support/advocate for you - or do phone appt so if gets too much you can hang up!!).
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I really hope somebody listens to you soon. We did not have much help from dieticians to be honest but some people do. We did see a good one at the Manchester Children's Hospital actually when James' Immunologist was trying him on a wheat free diet so obviously there are good ones out there.
Kelly x
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Emma ((hugs))) I am SO frustrated for you. I cannot believe how much I lucked out with my HV, it was her who suggested I go dairy free and my GP referred us straight away to paed who prescribed HAF. I wish I could refer you to all the people I've seen :'( (But you're hundreds of miles from me otherwise I would lol!)
I really, really would go df if you can. Try it for a week, see how she goes, then you will more than likely have some concrete evidence. If you have to, tell GP you are going back to work, can't bf and baby needs some HAF...
xxx
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just wondering how things are going for you now (re this post and your other general post) ???