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

Back to the dietitian... a routine visit, for dairy free 'Baby'

'Wow you've grown!'

is what they said to 'Baby' at our most recent appointment! Or words to that effect!

And yes, I must admit, she certainly has!

My purse has been sending me that message for some while, now - I've already had to buy her almost a complete new set of school uniform and she only started school in September!

So that was the good thing about our appointment - confirmation that 'Baby,' despite her milk allergy, is thriving well.

Must admit, there wasn't much else we gained this time, as what with the nature of 'Baby's' allergy being Non-Ige, all 'Baby's' milk challenges are carried out a home - supposedly at six monthly intervals. However, all our attempts to challenge her with baked milk recently, have been frustrated by her frequent unexplained tummy aches (which I am still trying to get to the bottom of) and by her picking up various illnesses from school. 

As I've mentioned before, you have to be well in order to carry out a milk challenge* and as her reactions to milk are mainly delayed gut-related reactions, I've no idea whether these tummy aches have been cause by accidental exposure to milk, or whether she's picked up some bug. If it is an accidental exposure to milk, it would leave her gut needing a break to heal up, and get better... so we keep waiting for a golden window of opportunity to appear! 


So what did we get up to?

1) Each time we go, they check 'Baby's' measurements. 

They weigh her. These days, it requires a much bigger set of scales:

The scales!

And they measure her height, on this height chart:

No, she hasn't reached the clock, just yet!

2) We discuss her food intake. 

This enables the dietitian to see if 'Baby' was getting the right balance of food overall. It also enables her to recalculate 'Baby's' calcium intake - to ensure that she's not missing out. The dietitian might offer some tips, on how to improve intake, if required. This was especially useful in the early days of weaning.

Stupid me, sits there at this stage, 'umming' and 'ahhing' a lot, as I try to cast my mind backwards and think about what we've been feeding our little one. Only after the appointment (DOH!), does it occur to me that next time, I should be more organised and take the following, as I think this would make things a bit easier:

• a copy of the school's three week lunch plan 

• a meal plan for a 'normal' week at home

• a more precise calculation of her daily dairy free 'milk' intake (including how much she has at school)

3) We also discuss her progress (or lack of progress) with the 'Milk Ladder,'* along with any other concerns that we might have.

At the moment, we still need to attempt a baked milk challenge every six months (assuming that 'Baby' is well), but like I said, we're still working on this one.

Originally, when we saw our first dietitian, we went through the same sort of process, but 'Baby' was weighed on a very different set of scales, and, at that time, as a breastfeeding mother, my intake was closely monitored too! We also had appointments quite regularly - at least every 6 months. However, 'Baby' being older now and having moved house to a new area, our appointments have been scaled back to yearly intervals. In fact I got the impression they were not that fussed about seeing us at all! 

I can understand why:

• She's had all the tests, both blood tests (she wasn't keen on those) and skin prick - (much more harmless)! The tests revealed nothing - except that her allergy is Non-Ige mediated*. That means she's not got the life threatening version (panic over, 'cos at one stage 'Baby's' was having some interesting rashes).

• We've been managing her dairy free diet successfully at home for a while now, so there's not all that much they can teach us there, now that we've 'learned the ropes,' so to speak! 

• There are so many children developing food allergies these days and so few allergy professionals (by comparison) that they've got quite patients already!

We only had one thing to test, but it still took up most of her arm!

So, why do we go?

Well:

• We're still hovering around step one of the milk ladder.* We thought we'd achieved this step in the summer, but then, what with various things going on; emptying our old flat for sale, family illness etc. we had a short break and then it seemed that 'Baby' was no longer tolerating the malted milk biscuits. GRRR! As, we're still hoping to work our way up the said milk ladder, I wish to keep my foot in the door (as it were) with the dietitian - in case I need to refer back to her for advice.

• I want them to keep monitoring her. Yes, we're doing okay with her at the moment, but this may not always be the case! I want to keep her on the books, to make sure she doesn't end up forgotten - like an old teddy bear, deteriorating in a dusty box in the attic.

• To get updated nutritional advice - the dietitian's handout on calcium sources has significantly more content than last year!

• Also, just on the off-chance that some new miraculous discovery could advance 'Baby's' ability to tolerate cow's milk, I want to be in there with my appointment already. After all, it took us long enough to get an appointment in the first place!!

Of course, what I really long for, is the day when 'Baby' outgrows her allergy, and a visit to the dietitian is no longer required...

* Glossary:

Milk Challenge - when you try to find out whether an allergic individual is still allergic to milk, by giving them a small amount of milk, in some form. If severely allergic, this will take place within a hospital setting. If not severely allergic, this will take place at home, according to instructions provided by your Health Care Professionals.

Milk Ladder - the term given to a structured approach which is used to reintroduce cow's milk to children with a cow's milk allergy. It is based on the premise that if children can be found to tolerate baked milk (apparently 80% can), they should consume it regularly. Their bodies may then be induced to progress gradually to accept cow's milk in other forms. As a result, they are more likely to outgrow their milk allergy. I have seen several examples of milk ladders. They all work on the same principle. My preferred version has the approach broken down into twelve stages.

Non-Ige mediated food allergy - is one that does not present symptoms immediately. Reactions may occur hours, or even a few days later. This kind of food allergy does not show up in tests but is diagnosed via food elimination, followed by a challenge, in which the suspected allergen is reintroduced.

Related Posts: 

Weaning the Dairy Free Baby - First Steps!

Dietitian time coming up!

When food challenges seem to fail...

When food challenges seem to fail...

OH!...... BOTHER!!

'Baby's' at it again... sniffling and snivelling like a good 'un!

I mean, I wouldn't mind, but this has been going on and on for months - off and on - in fact, ever since she started school! I know, I know, they catch all sorts at school, so it was bound to happen, really, but I really need to get on and do another milk challenge* with her! And they're really not advised, if your little one is not in tip top condition - they tend to have a stronger reaction, if it all goes pear-shaped! Good health being required for a milk challenge, finding a time when 'Baby' has been well enough to challenge, has become a challenge in itself!

BAH!!

Our last milk challenge was months and months ago (read about it here). It started well... but then, well events overtook -the final bit of emptying-flat-for-sale coincided with being unable to nail down the dietitian. By the time she got back in touch, we'd lapsed from our daily biscuit and suddenly, it seemed 'Baby' wasn't tolerating them any more.

Strange! 

And incredibly disheartening! It had all been going so well - we'd never got this far before. And nobody had ever mentioned the merest possibility of going backwards! Going back down the 'Milk Ladder,' that is!**

Once upon a time, you'd have hardly heard it mentioned - on Twitter, FB and the like - but now it seems that almost everyone (well, almost every allergy Tweeter) is talking about 'Food Challenges' and 'The Milk Ladder.' Partly, I think, that's because it's taking a while for research and good practice to filter through to grass roots level, as it were, and partly because there's a lot more of us allergy mums out there, who are blogging and tweeting about it now.

It's a good thing, I think - the more people share about the nuts and bolts of their experiences... well, it informs others going through the same thing, doesn't it? Particularly when getting hold of good advice can sometimes prove a challenge in itself! 

I get really excited (and envious) when I hear of children passing these challenges and moving onto the next stage of their allergy journey - hopefully progressing towards the point in time where they'll completely outgrow it. I heard of two stories like that, just the other week! One from Heddi, of Dairy Free Switzerland. You can read about it here. The other, Lisa Wadell - Specialist Peadiatric Allergy Dietitian and fellow allergy parent.

I must admit, whilst it is exciting to hear of any child succeeding in outgrowing an allergy, I get a particularly thrill when I hear of a child with milk allergy growing out of it - because that's our nemesis too! It gives me hope... that one day that will be us!

The statistics look good: MOST children outgrow their milk allergy, by the second decade, according to Dr Adam Fox - speaking at The Allergy Show.

'Baby' is convinced. 'Mummy, when I grow out of my milk allergy, can I have...?' is an oft heard refrain! Now that she mixes with other children her own age all the time, at school, she's become acutely aware of the differences, that before, did not matter... that I shielded her from, in our own little free from world. 

Around the time she started school, she declared that she would like a carton of cow's milk for Christmas. Such glorious optimism! So sadly misplaced! Instead I got her this:

Yes, it's not a real carton of milk - but the nearest I could get!

I'm afraid I'm not quite so optimistic. Remember, of all the Disney characters, I think I identify most with Eeyore? Part of me secretly worries that maybe we'll not fall into that glorious MOST, but fall by the wayside into that.... SOME! 

After all, it does happen that some don't make it, or the statistic wouldn't be there! 

I was particularly pleased to hear, therefore, of the progress of Lisa Waddell's children. Ages ago, I seem to remember her wishing me luck (via Twitter), when, once again, we embarked on a milk challenge (we've had quite a few now). From what I remember, she seemed quite despondent, as, in their circumstances, there had been no change. 

The received wisdom at that time, was that most children outgrow their milk allergy by the age of two - although I think, at the time, that was being revised upwards to about four or five. Lisa's children were a bit older than that! It wasn't looking good! However, the tables have turned, Lisa's children are now working their way up the 'Milk Ladder,' and, interestingly, it seems that, like us, they have sometimes suffered setbacks too - where things have seemed to go backwards rather than forwards! 

Huzzah! 

Maybe we're not quite so strange, then! Maybe we haven't completely slipped off the ladder, after all!

I'm also cheered by Lisa's experience, because as a Dietitian (working for Nottingham Food Allergy Service) she has to advise others on how to go about a milk challenge. Having been through the experience herself, as a parent, it seems to me, that it leaves her in a far better place to offer advice - she knows exactly what we're going through! 

You can follow her via her 'Food Allergy Nottingham Service' Face Book Page, and on Twitter (@lis_wad). She is also available for private appointments.


Meanwhile...

Apparently, it's better to go through a food allergy and fail than not attempt one at all! Recent research suggests that it leads to a better quality of life - because you've faced the worst and got through it! 

So there you go! 

Don't believe me? Read about it here!


SO the message is: if at first, second, third, etc. etc. you don't succeed, don't give up... just yet!

Glossary:

*Milk/Food Challenge - when you try to find out whether an allergic individual is still allergic to some food (in our case, it's quite obviously a Milk Challenge). 

**Milk Ladder - this is a term referring to a structured approach to reintroducing milk to an allergic individual. It begins with the individual being able to tolerate a product containing a small amount of baked milk (baked milk is most easily tolerated) and progresses through milk in various processed forms, until milk itself can be tolerated. I have seen various versions of this, but my preferred version is in twelve progressive stages. I have seen it shared quite widely (online) but have not done so, for two reasons: out of respect for the author, whose permission I do not have, and because it really ought to be followed under proper medical supervision.

Related Posts:

Challenging 'Baby'

Challenging 'Baby' - the adventure continues?

Challenging 'Baby' Again!