Is the 'Dairy Free Baby' dairy free no more?? or Reintroducing Cow's Milk via the 'Milk Ladder'

So, BIG news - the dairy free baby is NO MORE!!

No, it's all right, she's not expired, it's just that 'Baby' - no longer a baby to be fair - is also no longer allergic to milk!!

It's taken eight years for this momentous event to arrive, but I'm SO glad it is finally here!!

In the beginning...

Initially we were told she would be likely to grow out of her allergy by the age of two (you can follow the high/lowlights of our journey in the posts linked below this one). When that didn't occur, we were told maybe by the age of four, and then, well... maybe never!! 

Well, THAT made me panic!! 

The refrain of 'When you hopefully grow out of it...' had often been heard often in our home, and 'Baby' was counting on it!! She blissfully ignored the caveat 'hopefully', that I carefully added each time. She was looking forward to ice cream, desserts and so much more - the kind of things she saw others happily scoffing - usually right in front of her!!

The realisation of the dream - Mr Whippy - eyes on the prize!

Along the way, we were encouraged by our dieititan, to try and reintroduce milk via first of all biscuits. The number of times we tried 'Baby' with just a malted milk biscuit, only for her to react to the milk in it!! I think that if I hadn't heard Dr Adam Fox, sharing his expertise at The Allergy and Free From Show in London, I would have been tempted to give up! From what I remember, he said that most (around 80%) children grew out of their milk allergy by the second decade. So we kept hoping, and retrying every three or four months - clinging onto our copy of the MAP Milk Ladder, in the hope that one day, 'Baby' might progress further.  

The 'Milk Ladder'

The 'Milk Ladder,' for those of you who don't know, is a framework, produced by top allergy healthcare professionals, by which parents (working under the guidance of professionals), can attempt to safely reintroduce cow's milk to children with non-Ige mediated cow's milk allergy. 

You start gradually, with baked milk products (in which the baking process will have broken down the milk proteins - making them easier to tolerate), and then work up through various forms of processed products, which break down the milk protein a little bit less at each stage, until you reach the point where cow's milk itself can be tolerated. The version we were using was the first version, with twelves stages/steps.

Eventually, around about the age of 3 or 4, 'Baby' seemed to be able to tolerate a biscuit for Day One of her trial, then Day Two, until around the age of 5 or 6, 'Baby' finally seemed OK with malted milk biscuits, and we had a glimmer of hope! We had achieved the first rung of the (then) twelve step milk ladder... but the twelfth rung seemed an awfully long way off!

Then we hit a bit of a wall!!

Stalled!

Illness followed, lots of it, 'cos 'Baby' had started school, and seemed to come down with EVERYTHING that came her way. With her immune system down so much during that first year of school, and a number of unexpected 'milk challenges' (where she ended up eating things at school that had milk in, by mistake), we couldn't seem to find a suitable window to challenge 'Baby' any further. 

It was especially tricky as I wanted to be able to keep an eye on 'Baby', in case she reacted badly - if she was at school and had a bad tummy it would be tricky for her to deal with and might be mistaken for a tummy bug. And then, once we did find a window, sometime during Year One, it was a tricky job finding something suitable for the next step - the baked muffin.

It should have been simple, but I couldn't find plain muffins. 'Baby' didn't like Blueberry muffins (she took exception to the blueberries), or lemon muffins, and I thought chocolate chip muffins would be several steps too far, as chocolate is much higher up the ladder. Stuck, I decided to try 'Baby' with mini Battenburg slices, which worked for a while, until she got bored of eating those. 

Even the inducement of completing the ladder was not enough to persuade 'Baby' to continue eating Battenburg. She was also bored of eating malted milks (shock/horror/groan), so we had to drop those too (and she hasn't eaten another since, to the best of my knowledge). I just couldn't understand it - at her age, I'd have loved the chance to gobble down malted milks and Battenburg slices galore!!

I did consider baking some plain muffins, but 'Baby' is notoriously fussy and if she did like them, or failed the challenge they would all go to waste, as we didn't have much room in the freezer.

Making progress!!

If it wasn't for another trip to our dietitian, I'm not sure we would have made much progress. We saw someone new, who confidently asserted that if 'Baby' was OK with one item of baked milk, then she would be OK with all forms of baked milk. 

I was a bit doubtful, to be quite honest, as I'd heard of others slowly incrementally creeping their way up the ladder (having broken the steps just even further, by starting with a quarter of this and a half of that). But as it happened the new iMAP milk ladder works by the same principle as the advice the dietitian had given us - the former twelve steps, have now been amalgamated into six (see here).

Not quite daring to take the dietitian at her word, we tested 'Baby' thoroughly with croissants and all sorts of other baked goods (although not those containing dairy substances from higher up the ladder), just to make sure, and sure enough, she was absolutely fine with them!! So, our confidence boosted, it was onwards and upwards!! 

And, to our surprise, each step of the way, 'Baby' aced it. Our surprise being mainly down to the fact that progress had been so long drawn out in the early stages, and here she was flying through!

Reaching the top

Having lived with a dairy free child for so long, watched so carefully over her, and having longed so much for a resolution to her allergy, I could hardly believe what was happening. As she aced each step, I was torn between pleasure and pain - pleasure for her progress and pain because she was able to eat things that I still can't. There was, I must admit, the odd twinge of jealousy.

But how can you begrudge the lifting of barriers, the freedom of choosing at will and being able to try out so many different new foods?? The delight and amazement in her voice  the first time 'Baby' went into a garage, with me (to pay for petrol), and suddenly clocked the rows and rows of chocolate and realised she could eat them!! 

'Mummy!' she said, 'look at all this chocolate!'

I suddenly realised, that she, like me, had been studiously avoiding the aisles that contained food that had been 'out of bounds' due to her allergy.

She was so excited, I took a piccy!

Of course, I had to let her try something, but that was tricky in itself. In fact, she was so spoiled for choice, that she couldn't decide what she would like and I had to choose something for her! 

Oddly enough, 'Baby' was quite hesitant about the whole process, of climbing the milk ladder, especially as we neared the end, and she realised she would no longer be the 'Dairy Free Baby'. 

'I like being dairy free,' she announced, 'it makes me special.'

'But you are special,' I told her, 'just by being you.'

'And anyway,' I added, 'you'll be able to eat all kinds of things, like ice cream...'

And then she asked...

'What if I don't like milk?' 

'Well that's OK,' I said, 'you don't have to drink cow's milk, you can still have your soya milk.'

I'm not sure she was that convinced!

And now??

So what for us now? Infinity and beyond??

Well 'Baby' still wants to hold on to her title of 'Baby' - she's rather attached to it, and I'm still holding on to the blog title - for now, anyway. I'd like to keep it available as a resource, for others. I'm hoping to continue to add posts - as and when I have the time. 

And funnily enough, now she's no longer dairy free, and loving the ice cream, cream buns and so on, for 'Baby', soya milk is still her milk of choice... unless it comes to hot chocolate, or milkshake, in which case she doesn't seem to mind, quite so much. AND she still prefers her dairy free cheese!! Good news for Violife then, as she probably keeps them in business!!

And The Hub, is quite happy to have a partner in crime with whom to share delicious treats - things which he'd avoided eating in front of her, in case she became upset. It was chocolate eclairs the other day! *sigh* At least I can get a free from version of those in the Tesco freezer department!

And then there's my mother, who couldn't get her head around the whole milk exclusion thing in the first place, and who now can't get her head around the fact that 'Baby' can eat ANYTHING she wants!! And there's my mother-in-law who keeps slipping 'Baby' choccy treats - oh well - can't have it all my own way!

And then there's me, still being dairy free who can't seem to tolerate milk (perhaps because I excluded milk for five years, so I could breastfeed) who will be continuing to look out for relevant products and  information - to share with anyone who needs it.

Oh, and by the way 'Baby' would like you to know that she's still very keen on baking, and now helping me write blog posts, as well!! She's been reading this post, and making little suggestions of her own, which she wants me to include. Ho Hum!! I suppose she's entitled to - she was the reason it all got started, in the first place.

Final thing:

BIG THANKS to all the lovely online dietitians and other medical professionals who have contributed, pointed me in the right direction and generously shared their knowledge on Twitter. Particular mentions go to Carina Venter, Julia Marriott and Lisa Waddell. You ladies are all stars - big, bright, shiny and glittery. I hope your patients and colleagues truly appreciate your work. I know I do!

Related Posts:

In the Beginning

Challenging 'Baby'

When food challenges seem to fail

Back to the dieitian - a routine visit

Related Links:

The iMAP Milk Ladder 2017 taken from:

Better recognition, diagnosis, and management of non-Ige mediated cow's milk allergy in infancy; iMAP - an international interpretation of the MAP (Milk Allergy in Primary Care) guideline by Carina Venter*, Trevor Brown*, Rosan Meyer, Joanne Walsh, Neil Shah, Anna Nowak-Wegrzyn, Tong Xin Chen, David M. Fleischer, Ralf G. Heine, Michael Levin, Mario C. Vieria and Adam Fox      *Contributed equally

Government response to the petition regarding baby milk

You may have been following the recent story over Croydon CCG's decision to drop prescriptions for specialised baby formula, including milk for babies with cow's milk protein allergy. If not, you can read about it here and here.

A petition was launched (see here) and the number of signatures reached 10,000 - the limit at which the Government is obliged to look at the petition and decide on an appropriate course of action. The Government response to the petition regarding prescribed baby milk formula has finally arrived. See below:

Government responded:

It is for Clinical Commissioning Groups (CCGs), through their local prescribing policies, to decide what to limit on prescription

Croydon Clinical Commissioning Group (CCG) has confirmed that its decision to approve recommendations to stop the prescribing of gluten-free products and baby milk were made in the context of the financial pressures the local NHS is facing and the need to make savings in the next financial year.

The CCG undertook public engagement on the proposals prior to making its decision, engaging face to face with over 300 individual local residents, patients and professionals at more than 30 sessions. A total of 346 written responses were received through the online and paper survey. The CCG advises that the response to the prescribing proposals was predominantly positive, with over 70% of respondents agreeing that the CCG should stop providing self-care medications.

Croydon CCG recognises the concerns of those people who currently receive these products on prescription and has advised it will work closely with local communities, Croydon pharmacists and GPs to support people to find affordable alternatives.

Department of Health

Click this link to view the response online:

https://petition.parliament.uk/petitions/178087?reveal_response=yes

The Petitions Committee will take a look at this petition and its response. They can press the government for action and gather evidence. If this petition reaches 100,000 signatures, the Committee will consider it for a debate.

The Committee is made up of 11 MPs, from political parties in government and in opposition. It is entirely independent of the Government. Find out more about the Committee: https://petition.parliament.uk/help#petitions-committee

Thanks,
The Petitions team
UK Government and Parliament

From the way the response has been worded, it does seem as though the committee of eleven MPs who have considered the merits of the petition, has actually looked into what has been happening, but unfortunately, the response is as I feared. Basically, they have reached the conclusion that it is up to Croydon CCG to do as it thinks best.

I am disappointed that in their response to the petition the MPs did not consider the limited response to Croydon's consultation (merely 346 - less than one in a thousand, of the local population), or that the wording of the consultation was inaccurate - in stating that specialized baby formulas were the same price as specialized formulas and could be found freely available in local supermarkets.

Also, I disagree with the response of the Government that around 70% were in favour of the prescription changes. Indeed 70% were in favour of changes to self-medication, but that was a different issue, in regards to changes to baby milk prescriptions, the figures are very different. If you read the consultation report, see below for a direct quote (see here for the full report), the breakdown shows a very different figure in regards to the specialized formula - which indicates that if the consultation had been worded accurately, it may well have resulted in a decidedly different outcome.

From page 123, of 332 of the report

Although the outcome, so far, is not what one would have wished, there are still things that can be done. The petition can still be signed and shared as widely as possible. If, in the next four months or so, the petition could reach the 100, 000 response point, then Government would be obliged to consider debating the issue in Parliament. If the petition reaches this stage, we would ask everyone to write to their own MP, as obviously every positive voice in Parliament would count.

Meanwhile, a Campaign group has been set up to try and counter the proposals. It is seeking to raise awareness of the issues and looking at ways in which the decision can yet be challenged. Various professional bodies, Allergy UK and The Anaphylaxis Campaign are also seeking to try and persuade Croydon CCG to reconsider their options.

The Campaign group is also working on ways of helping people in the Croydon area, who could potentially be affected. For the time being, Croydon CCG has said specialist baby milks can still be prescribed where 'clinically necessary', although they have by no means made it sound permanent. The words 'At this moment in time...' have been used, in the communications that I have seen.

If you live in the Croydon area and would like to contact your MP, or complain to the CCG, please contact the Campaign, who would like to work with you. They have also set up a website see here.

The Campaign group is also advising people to keep an eye on their local CCG, in case similar proposals are made in other areas of the UK.

Please follow the Campaign on Face Book and Twitter and share their posts to create awareness. The worry is that where one CCG leads, others may follow. We really are all in this together.

Why my child is NOT a 'fussy eater' - food aversion and food allergy

'Fussy eating.' Have you ever heard that phrase? 

Yes? 

Well I have and I hate it! 

It's the hidden condemnation, the stigmatization that accompanies the phrase that I really hate the most. The assumption is that as a child you're trying to get attention, or 'get away with' something, or that as a parent you haven't been strict enough. As far as I'm concerned, although this could be the case, in some circumstances, this kind of stigmatization really ought to be stopped!!

There's a reason why (in our house) most dinners come with cooked carrots!!

For us, it all began at a really early age. 'Baby' was just beginning to wean. It was difficult to put her down and get on with things. I didn't like to cook with her in a sling, in case she got hurt, so cooking food was altogether a tricky matter. 

To begin with, I relied a fair bit on bottled baby food, until one day I decided to take on the task off cooking her food from scratch. I dutifully boiled up and mashed some carrots (not without resistance from 'Baby' I might add). She, being hungry, by the time I'd finished, happily accepted the first mouthful, then she took the next a little more slowly... and then she stopped. 

It's amazing how much a six month old face can tell you! She looked incredibly dismayed. Big tears rolled down her cheeks. This was not what she was after! And she steadfastly refused to take any more! Me, inexperienced, panicky, immediately felt the pressure and tried to perform the 'firm but fair mummy' trick. No, no, no, she wouldn't take it. Her mouth was firmly sealed shut. That was that. Angry, confused and... humiliated even, I eventually gave in and found her something else to eat - after all I couldn't let her get hungry, could I??

Some people might think that's where I went wrong and that I caved too quickly. But I honestly couldn't see how a six moth old could be 'trying it on'. And as we continued to wean she appeared happy to try all kinds of food, but then things went into reverse - her tastes started narrowing down and bit by bit 'Baby' became a lot more selective. 

If only (and not for the first time) I knew THEN what I know NOW... I think quite a few things could have been a lot easier for both of us!

1. A lot of food advice seems to be hung up on everyone getting their five - now SEVEN - a day. Good advice for healthy adults. Not quite as necessary for babies, whose diet should be higher in fat than fibre. If you're fed this message when your kiddo is struggling to eat one a day, where do you go from there??

2. Some people are super sensitive to taste. I watched a programme about this once. I so wish I'd recorded it and tracked down the expert they interviewed. She explained how some people can detect taste in a way that others can't. She called them 'super tasters'. I believe she found they have more taste buds than the rest of us. 

I can't remember the detail, but do remember that this struck a real chord with me at the time, in connection to 'Baby'.  If I try to 'hide' something in her food, she's on to it! She can also detect different brands of food. She's a lot better now, but at one time, she narrowed herself down to ONE type of sausage - no other sausage would do. So every time we had sausages it had to be that brand or she wouldn't eat it!

3. 'Fussiness' over food can work as an early warning system for allergic children. The Hub's nephew, somewhat older than 'Baby' is allergic to nuts. He also is very sensitive to tastes. Once he even detected that some food we were eating in a restaurant was a bit off. It turns out that food allergy often goes hand in hand with food aversion - there's some kind of detection system that operates with saliva in the mouth. It's a kind of protective response. I learned this from a Paediatric Allergy Consultant on Twitter (George du Toit @goallergy) who tweeted: 

Amazes me that infants can correctly ID many of the foods they r allergic to, typically precedes verbal skills.

and:

Oral mucosa is packed with allergen & toxin recognition cells, designed to protect us, generate early warning signals 

Du Toit included a link to this article. I find this both fascinating and also incredibly helpful - recognition that there is link between food allergies and food aversion. I know this is a common topic among children without allergies as well, but many food allergic children definitely have that problem. And who can blame them? After all, food actually CAN and sometimes DOES hurt them!

4. Getting heated about food refusal can make things worse! Negative emotions can actually embed the problem deeper. The best thing you can do is remain calm and take the pressure off - insisting that the child eat something they really can't stomach adds to the anxiety in the child and can lead to shut-down.

At the end of the day you want a child to enjoy eating their fruit and veg. The danger of making them eat it under duress, is that they will eat it when forced, but will not learn to enjoy it. Then, instead of developing a healthy habit for life, they will not eat fruit/veg. when there is no longer anyone around to make them.

5. Avoid introducing sugar (including natural sugars) too soon. It turns out a lot of baby food manufacturers add fruit juice to their veggie mixes - which obviously sweetens them and makes babies more likely to eat them. Although it may seem like a trendy fad (to be avoiding sugar) it makes complete sense to me, with the food journey we've been on. It's much harder to reverse a bad habit, once it's begun.  I am convinced that allowing 'Baby' to eat biscuits contributed to her food refusal - just you try explaining to a nine month old why she can't have another biscuit!! The same thing goes with chocolate! No one had to teach MY kid how to like it!!

Some 'Do's':

1. Keep offering food, you'd like them to eat, even if they have previously refused it.

2. If something is refused, don't give up on it, but just leave it for a while (like several weeks, I find, 'cos 'Baby' has a very good memory) before reintroducing it... again and again and again, if you have to. I've heard it said that it takes 20 tastes to move from liking to disliking a food. In 'Baby's' case I think it's more like 200, but we are beginning to see results!

3. Model good eating behaviour: 

• Everyone in the family sit down and eat together, round a table.

• Try not to appear 'fussy' yourselves. (Yes, most adults I know have things they are 'fussy' about eating (i.e. sprouts), so why do we condemn young children??) Don't go the other way though, with too much, 'Oh this salad is soooo yummy!' Kids just won't believe you!

• Provide and eat with your little one the things you'd like them to eat. This has been tricky for me, as not being able to eat such a wide variety of raw fruit and veg. (due to OAS) has meant that I haven't been able to model this too well for 'Baby'.

4. Eat in company where you can - particularly with peers. Children like to copy their friends, and also show-off what they will eat, when their friends won't, so this can be a handy little trick, to have up your sleeve. Obviously this also means that the others around the table need to be eating things that your little one CAN eat. With multiple allergies I appreciate this could be slightly more tricky.

5. Offer variety, if something is refused don't argue, threaten, or create a fuss, just allow the child not to eat it. Try to provide some of what you know they will eat, alongside things you suspect they won't.

6. Avoid talking negatively about your child's eating habits in front of them - this could also reinforce negative responses to food. For example, if they continually hear you say, 'She won't eat this,' or 'He's just fussy,' then it's not going to help matters at all and could be self-fulfilling.

7. By all means present food attractively, nice plates, cutlery etc. but don't expect this to result in a miracle cure overnight! 'Baby' was so suspicious of food that even if I made a face on the plate, she's spot a bit of fruit/veg. a mile off and refuse to even try it - all that careful food prep. for nothing!!

Presentation can help - I dressed up her pancakes to get her to eat them, but she wasn't completely averse to these, just slow!

8. Resist pressures from well-meaning friends/family. Avoid eating with those who put the pressure on!

9. Ask for help. Explain your approach to family/friends so that they can 'fall-in' with your approach. If it gets really bad, see if your GP will refer you to a dietitian for back-up. 

Some 'Don'ts'

1. Don't blame the child.

2. Don't 'take on' the guilt trip - either from yourself or others. I knew I'd tried to introduce things the right way. I've tried threats/bribes all sorts, but NONE of these worked. 

3. Don't give up. It may take a while - a lot longer than some other peoples' kids, but it can be done. And by the way, most kids go through this to some extent or another.


Our breakthrough

Surprisingly for me, the biggest break-through came when, finally, last year, I went to see the GP. It had got to the stage where Kiddo was not wanting to go to school, because she was feeling pressure to eat things that were making her gag and to finish everything on her plate. 

I has also realised that the Kiddo had all kinds of other sensory sensitivities, involving light, sound, touch, being underwater etc. some of which we had conquered, some of which we were working through and some of which remain on our 'to do' list. These are often associated with autism, but there is no way Kiddo is autistic, but I wondered if they were linked to her so-called 'fussy eating' somehow. Feeling a bit out of my depth, I decided to see a local GP.

The GP listened carefully to everything I said and agreed to refer us on, but crucially, she told me and my child that she thought I had been doing all the right things. She told me she had three kids. All of them had been raised the same way but that one of them, for no obvious reason, was exactly as I had described Kiddo, with all her sensitivities and food aversion. 

Then the GP told the Kiddo, that it'd be good if she could keep trying things - she didn't have to keep eating them if she didn't like them, but just give them a try. That really clicked with the Kiddo and from that point on she has often been heard to say, 'Can I just give it a try, Mummy?' even with foods that she knows she has refused before! Some things she has cautiously continued to eat, others she hasn't...yet! But I know now for sure that we have now 'got the ball rolling', so to speak.

Suddenly, she wanted to try strawberries, again, and... finally liked them!

I think this approach worked for us for three good reasons:

1. It gave me confidence because it reinforced the conclusion to which I had already come - it wasn't the Kiddo's fault, or my fault and that piling on the pressure just wasn't working.

2. It gave Kiddo the confidence that Mummy was doing the 'right thing'. That might sound strange to you, but at the time, school was giving very different messages about food and a few other things. This was 'mixing up the messages' for her and making her doubt my wisdom!

3. It gave the Kiddo the confidence to try again and know that it was okay not to complete something - that nothing bad would happen - which actually freed her up to experiment.

Huzzah!!! 

Onwards and Upwards!!

Further Reading:

Do you make this mistake at the dinner table?

'Picky eaters' will not starve themselves, but problem or resistance eaters might

When feeding therapy becomes aversion therapy

Feeding problems in infancy and early childhood: Identification and management

I love this last one, for 'keeping it real'...

What a pediatric dietitian feeds her kids for dinner

Is breastfeeding the dairy free 'Baby' finally over?

BIG disclaimer: 
Sorry but I feel the need to state this at the outset, because breastfeeding is oft controversial: This post is neither a 'for' or 'against' breastfeeding post! It is what it is - a description of my own experiences which may or may not help anyone else in similar circumstances!!


Well that's it then... I think! 

I cautiously say I think I can safely say my days of breastfeeding the dairy free 'Baby' are finally over, but with 'Baby'* you never know! She was sniffing at my boobs again this morning, but I laughed and gently nudged her away. She didn't protest.

Over the last few months, the odd times she has tried (just to see if there's been anything there for her) her efforts haven't been met with any success. That said, she hasn't tried that hard and I've not encouraged her - half suspecting that if she persisted she might get somewhere!

You might be wondering what on earth I'm on about - especially if you've done the sums and worked out her age - I mean she's five and at school now. You may well be thinking:

'She can't still be breastfeeding, surely??'

Well to be honest, it's not been proper breastfeeding for some time now - just the odd suckle or two first thing in the morning whilst she's still 'coming round' from sleep. A few quick draws on the boob and she's been done! And then maybe the odd jump on my lap, when she's been tired or hurt herself and needed comfort or something like that. 

I could perhaps have got tough and stopped her earlier, but I let it drift - in the end partly as an experiment - because I was curious as to how long she would take over the process and partly because, as a hang-over from the last vestiges of her separation anxiety days. I didn't want her to feel as though she's been pushed away - that always seemed to make her anxiety worse and her behaviour more needy. These days, no-one would ever know she was ever anxious about anything - she seems so confident and sure of herself when she's out and about!! But the last vestiges still remain. If she wakes, in the middle of the night, she hates to find herself alone and creeps back into our bed!

I have to say, if you had told me that I was going to breastfeed this long a few years ago, particularly at the time I was struggling to feed my little one, I would have thought you were talking utter rubbish. Breastfeeding this long is certainly NOT what I originally intended, but then I'm not sure I ever really worked out when it was you were supposed to finish - they didn't touch on this subject, not even once at breastfeeding school!!

It's okay... I know now - it's whenever you/your little one feel ready, but why didn't they make that clear at the outset?? Where was the guidance for that?

Some of you may well think we're strange... abnormal even. You may have given up breastfeeding at three, six, nine or possibly twelve months with nary a backwards glance. Or maybe when your little one was days or even hours old. I used to think that too, before that extended breast feeder was me!!

Truth is, 'round the world, in various civilizations, breastfeeding for the first few years is actually the norm! We in the UK are the ones who are strange! And having dropped it, I kind of feel like we've lost the 'knowledge' of what to do in various situations. 

This post by a Canadian certainly opened my eyes... and had me in stitches at some points too! Another inspiring post, offering an African perspective, can be seen here.

I'm not saying it was all plain sailing - initially, when I was desperate to be able to breastfeed, it was a real struggle.

We had problems latching on, breastfeeding dairy free, there were painful infected cracks in my nipples that soon became craters. There was also a tongue tie to snip, a touch of mastitis and poor milk supply. Once all these problems were 'sorted' and I'd settled in to feeding my little one... oh, and got over the agony of needing-to-avoid-dairy, it became a normal part of life. She needed sustenance, warmth, comfort and I gave it to her. 

Later on, during weaning, when 'Baby' refused to take the alternative, (Nutramigen AA hypo-allergenic formula, in our case) I continued to breast feed, not having any idea at that stage, that various ways around this problem might exist. All I knew was that she needed calcium and that my milk could provide it for her, but I also knew that milk was a great safety net when she fell ill. Usually, when she could eat nothing else, my milk got her through and no doubt (filled with antibodies), helped her get well.

'Baby' was a hungry baby. In fact she was such a hungry baby, that I ended up switching to breastfeeding on demand to keep up my supply. And, demand she certainly did - day or night. Lack of sleep became a bit of an issue. There's no doubt that those night time feeds were a killer. She DID need them beyond six months, whatever my HV told me to the contrary. AND woe betide me, if I failed to supply! Ear splitting screaming would follow and living in a flat above a woman who had complained about the noise, before I'd even had a baby, well... I didn't like to argue the toss! 

Of course there were points where I got fed up and never thought I'd see the day where 'Baby' would come to an end! However, over time, as she needed me less, she'd ask less and I stopped offering it up so readily - especially as she got older and could have things explained. I made excuses, or said, 'Not now!' when previously (certainly when she was tiny) I'd have dropped all for a feed. 

More recently, I've had little chats with her now and then - about the fact she's such a big girl and doesn't really need it anymore. 'But I love it Mummy!' It's so yummy!' has been her protest. I still didn't push, let it lie, gave her time to absorb the information, think, decide.

Fortunately for me, The Hub has been very understanding and let me do as I thought best, and if family/friends thought it all a bit strange, at least they didn't say so to my face!

I have seen comments (usually from men) which accuse people like me of getting a cheap abnormal thrill from breastfeeding. This couldn't have been further from the truth. Although I had read that it was possible to get a 'pleasurable' feeling from breastfeeding, certainly in the early days it was anything but - I was in agony! And later on, it was just routine - what 'Baby' needed, 'Baby' got. There was nothing sexual in it for me; just the emotional pleasure that I got from being able to nurture my baby and give her what she needed.

I have seen other comments (usually from women) accusing people like me of being needy - of needing to be needed. I honestly don't think this was true either. As she got older and I realised that she really didn't need my milk any more (by this time she was happily drinking the junior version of Alpro soya milk) she just seemed to need my milk as a way to connect back with me, keep me anchored down all to herself. And I was content to let her, if she felt the need, although I didn't make any more offers.

Some deride extended breast feeding, thinking it will make the poor child needy and over-dependent on their mother, or cause them to be laughed at. Well for one thing, I've never been one for feeding in public (witness the lack of breast feeding photo here), unless I have to, and regarding the other, well, it's true that 'Baby' often prefers me when it comes to giving comfort. However, as I have been her major care-giver throughout her life so far, I don't think this is abnormal. She seems happy and well-adjusted enough - often dismissing me at the school gates, so she can go on her own little independent way. This, when some of her classmates have been clinging on to their mothers and crying! And I refuse to let it show, if I feel brushed off somewhat - it's time to let my little bird fly.

I used to worry a lot about what people would say - in case I was written off as some Earth mother hippy type (I am not, but who cares if I am). I have to say, I no longer worry about what people think. I just do what I think is best for 'Baby' and me! I think that's one advantage of having to work and even fight my way through the process of motherhood and being dairy free - I've learned to trust my instincts and stand my ground a whole lot more. 

And curiously, not being sure how I would feel, once breastfeeding was over, I find that I feel no regret, no hand wringing, no sighing for times past. I find instead that I am content that things are as they should be... 

And now that I no longer need to be dairy free for the purposes of breastfeeding, now what, for me?

Well avoiding dairy has never been about conscience or of seeking to live a 'healthier' life-style - that is a luxury for other people to consider as far as I'm concerned. I might still use almond milk and eat Coyo coconut yoghurt, as I really like them, but on the whole I've had enough of limiting my diet. I certainly would like to be able to reintroduce cow's milk back into my diet - if only to widen my choices again and not be worrying about traces. However, I have heard of mothers who have breastfed for a while finding themselves unable to tolerate cow's milk any more. I am curious to see what the end result for me will be. I think I will begin slowly, with the milk ladder, spread my wings, take my chances and see...

My only hesitations concern whether having more milk, cheese etc. in the house will lead to cross-contamination slip ups. With 'Baby' still being dairy free we don't want that! Also, up until now, it's always been her and me dairy free against the world together. I don't want her to feel stranded and... on her own - like I fear she often does at school. Maybe I'll have to be a secret dairy consumer - you know, late at night, or whilst she's at school! But really, I'm just hoping that it won't be long before she'll join me - on the other side and be able to enjoy it herself! After all, there have been some promising indications recently... and five is the age that they said it might happen!

Here's hoping!!

If you've been through the same and have any tips for me, I would love to hear from you!

* 'Baby' is clearly not a baby anymore and hasn't been for some while. She only remains 'Baby' for the purposes of this blog, where she has been known as 'Baby' from the beginning!

Related Posts:

After the diagnosis... breast or bottle?

Breastfeeding a baby with cow's milk allergy means no more milk for me

Which dairy free milk is best?

Finding the perfect formula for the dairy free baby

Weaning the Dairy Free Baby - First Steps

Are you getting enough... Calcium?

Let's have some peace, love and understanding - 50 Shades of... food allergy!!

Once upon a time, I honestly had no idea you could be dairy free. I was quite blissfully unaware. That all changed when 'Baby' came along and we discovered her (Non-Ige mediated) milk allergy!

Then, to keep my little one well and thriving, I had no choice but to learn about being dairy free and to be honest, time on, I'm still learning... as it turns out there's many variations or 'shades' of being allergic to food! This post is inspired by various conversations I've had on Twitter, but which for the most part will concentrate on being dairy free.

When I say 'dairy free', I tend to mean, not just avoiding milk along with all products made with milk, but also all products that may contain milk (with the exception of one or two that seem to have proved themselves 'safe' for us) along with any that are declared not suitable for those with a milk allergy! (This is based on our experience - what 'Baby' has reacted to in the past - she was so sensitive, that as a three month old baby, she reacted to a tiny amount of dried milk powder used in the flavouring of a packet of salt and vinegar crisps that I had eaten by mistake!! In fact, 'Baby's' sensitivity caught even our pediatrician by surprise!!)

I'd like to think the whole dairy free thing could be that black and white, HOWEVER, I have discovered that other peoples' experiences of being dairy free can be rather different! It has gradually occurred to me, over time, that many who follow us via the blog/Face Book page/Twitter account may well class themselves as dairy free, but have requirements that differ somewhat from ours*! Which is why now I sometimes list products on Face Book or Twitter that are not as dairy free as I might wish - but I always try to be as clear as I can, when I do so, in order to avoid any confusion.

So...

What are these 'shades of dairy free'?

Personally, I became dairy free not because I myself am milk allergic, but in order to breastfeed my dairy free milk allergic baby. I had to eliminate all traces of dairy from my diet, in order to make her well again. There are other mums out there who do the same.

However, it turns out that not all babies with a milk allergy are the same - they have varying thresholds of tolerance - some are less sensitive to dairy than 'Baby' and some are more! Some babies with milk allergies are not found to be milk allergic whilst breastfeeding or even whilst formula fed (this is because milk proteins in formula are processed to some extent, which can make them more easily tolerated) - allergic reactions in these cases only becoming apparent once weaning begins. 

Most babies with milk allergy are fine with a hydrolysed baby formula, which contains cow's milk, with the proteins have been broken down. Other milk allergic babies require a hypoallergenic formula that contains no cow's milk whatsoever, but is made with amino acids instead.

Then, there is more than one kind of milk allergy - you might be Ige (experiencing instant reactions or reactions that take place within an hour or so) or Non-Ige (formerly labelled as cow's milk protein intolerance, it involves delayed reactions which may not even present themselves for a few days). 

Some people may take several exposures to a trace amount,of milk, before a reaction becomes evident, others may react almost instantly to the slightest trace. 

There are also those who are outgrowing their milk allergy and are gradually becoming more and more able to accept milk-based products (there are various stages to this, that I won't go into here, but it's like a gradual phasing-in, until milk can be fully tolerated) they are still milk allergic, until it is completely outgrown. 

Some may well outgrow their milk allergy, to all intents and purposes, but then (like a friend's son) still occasionally find that they might have a reaction if they 'overdo' the consumption of milk or milk containing products. 

And then there's the fact that not all allergic people respond to allergens in the same way - the symptoms can vary enormously. Some may experience a potentially fatal anaphylactic shock and require epi-pens and hospital admissions, whilst others may have incredibly bad attacks of eczema or asthma, or (like 'Baby) might experience crippling gastro-type symptoms, reflux, or rashes or... well I could go on - there are many other symptoms. 

There are also those, who, surprisingly, only react to certain dairy products - like my little sis who can't eat cheese, or my niece who can no longer drink milk or eat most cheeses without getting a stomach-ache, but can eat yogurt, ice cream and chocolate (which I must admit confuses 'Baby' somewhat to see her cousin differentiating between foods in this way)!

Then there are those who can't drink cows' milk, but seem to be fine with goat's milk (please note, I do not advocate trying goat's milk with a cow's milk allergy sufferer, as the statistics are stacked against this one, and I've heard of too many people trying this, only to come a cropper)!

There are some who may or may not be milk allergic, but believe they are as a result of unreliable or unavailable allergy testing. Whilst the gold-standard is, of course, a professional diagnosis, by an properly up-to-date allergy doctor or dietitian, coming from our own experiences,** I understand completely why some people do self-diagnose. 

There may well be some for whom apparent reactions are psychosomatic, but again proper medical advice/attention is what is required in these instances - not allergy shaming! I particularly appreciate Alex Gazzola's thoughts on this one.

Then there are also those, who, are not allergic, but, believing dairy to be less healthy have made a lifestyle choice or who are Vegan and who will not react to milk traces, so are happy to accept products that do contain traces of milk. 

There are also those who are lactose intolerant - that is they cannot digest the lactose (sugar) in milk. Many lactose intolerant people can cope with small amounts of processed dairy - some even can have small amounts of cheese - or some use enzymes to help them digest their food.

Or, some may find their IBS symptoms improve, when they follow a diet that is free from various foods, including dairy.

And there are those who feel their autistic child responds better once they've cut out dairy.

And then there are those who develop a temporary intolerance to milk - perhaps due to intestinal damage, from something such as coeliac disease or following a stomach bug.

And then there are those who, for whatever reason, just don't like dairy. I must admit, I find this last one the hardest to understand that, as I love all dairy, but I do accept that it can happen!

In fact, if I stop to think about it, although I may not have actually listed 50 shades of dairy free here, there are probably far more than 50 shades of being dairy free as there are so many variations!! By the way, I don't advocate all of the above - I am just more aware of the breadth of the dairy free community than I used to be and am trying to illustrate just how broad it can be.

Peace, love and understanding?

Small wonder, then, that there exists a certain amount of confusion about all this. It is perhaps typified by the response of some restaurateurs who grumble that people claim to have food allergies and then eat food from other peoples' plates - plates that have not been prepared with the same careful precautions that have been followed for the allergic individual. As a result, when some people hear the word 'allergy,' their ears prick up and they begin to look for a rat to smell! 

To those of you who are looking for a rat to smell, yes, I understand your skepticism, I too have heard of people saying someone is allergic, simply because they are being fussy, and just don't like cheese, but, in my experience these people are in the tiniest of minorities. 

Please understand that those of us who are genuinely dealing with milk allergy are all dealing with slightly differing circumstances. It's all about those '50 shades' - some of us may therefore NEED to take more precautions than others and for those who seemingly take less precautions it still doesn't negate the fact that they do suffer from an allergy. 

Please don't take Pure Leith's attitude, who, when discussing allergens and restaurants last week said that some people's reactions are not too serious - according to her understanding it's only a problem if it kills you. No, it's true, my little one may not die if she has milk, but that does NOT mean she won't suffer. Because her reactions are delayed, YOU are unlikely to witness them, but I will still be picking up the pieces, hours later, maybe even the next day or longer - depending on how much milk she has been exposed to and how much the milk content has been broken down by being baked or processed and also her general state of health at the time. For some people, delayed reactions can literally last days. Left unrecognized or dealt with, in the longer term, delayed reactions can cause children to become malnourished, because their guts become damaged and unable to digest food properly.   

You may not be aware of this, but a gut that has been damaged by a food allergen, is traumatized. Imagine bad eczema on someone's arm, but actually it's not on an arm, but in the gut. The difference is that damage to the gut is unseen and there is no soothing balm that you can apply to help it heal. You just have to wait. This is why when we have failed a carefully carried out food challenge (to see if our little one is beginning to outgrow her allergy) we have to wait at least three or four months before trying again - to allow the gut to completely recover.

Please ALWAYS take food allergy seriously, even if you think some of those who claim to be allergic don't - I'm sure you wouldn't want to find yourselves in the position of an American restaurant (featured in the press, just this week), who didn't take it seriously enough... tragically resulting in a teenager's death. And I hope that equally you wouldn't want those of us with less visible effects to suffer also. After all, why should we pay for a meal that would make us ill or discomforted in some way??

And to those of us with varying degrees of being dairy free, let's be honest, let's educate ourselves as best we can, let's support one another, let's keep communicating (as rationally as possible - I know it can be hard at times, when feelings are running high) with the outside world, to help them understand our needs, and...

Vive la Difference! 

* Please note: whilst I accept that this may be the case, in regards to followers, I expect food manufacturers to be as transparent as possible in describing/labelling their food to avoid unnecessary misunderstanding and allergic reactions (i.e. please do not market food as 'dairy free' if it's made in the same environment or on the same equipment as milk products - it's completely misleading for those who are extremely sensitive and who could experience a reaction, if exposed to the tiniest of traces).

** Milk/food allergies can sometimes, but not always, be picked up in specific Ige blood tests or in skin prick tests. Such tests are hugely frustrating, as they can provide false positives or negatives, so, unfortunately, a test is not necessarily conclusive. This is why milk allergy should be properly diagnosed by a trained Health Care Professional, who can investigate your history, but, sadly, appointments with the experts are not always as available as they should be - there are more people wanting appointments than can get them, hence there are those who rely on self-diagnosis or on tests which have no scientific basis. Many parents still struggle to get GP's or Health Visitors to take their concerns about food allergy seriously. We only got our diagnosis for our little one by going private. Two local GPs completely misdiagnosed our little one with other completely unrelated conditions. Also, I personally have sat in my GP's surgery and mentioned about my OAS syndrome, and my reactions to soya, only to have the GP say 'Oh!' and nothing more! I believe more training is needed for first line medical professionals, in order to help them understand, spot and know how to proceed when presented with patients with potential allergies. I am very thankful, therfore, for HCP's who get this and are working to improve their colleagues knowledge and understanding!

Further reading:

Web MD Gluten-free/Casein-free diets for Autism

What you need to know about diagnostic allergy testing

Related posts: 

100 chefs - why I'm not bovvered...

Are we really allergic?

Finding the perfect formula for the dairy free baby