Wednesday, 16 May 2018

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!!


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:

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

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