Thursday, 22 January 2015

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!


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.


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! 


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.


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!


*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.

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  1. Thanks for including our recent experience. I hope you'll get to do another food challenge soon! We're now advised to feed my son baked milk at least 3 times per week (I'm trying for nearly every day) to prepare him for his next milk-based challenge this spring. Fingers crossed for all our kiddos.

  2. Thank you for sharing your thoughts. I fully understand there is rarely a good time to start a food challenge. Also if you have had a child with various colds and tummy upsets you can be reluctant to expose them to something that is likely to cause them further illness.
    We tend not to retry the milk ladder with our little boy as he is happy and reaction free on his milk free diet. Your post highlights the big change as they grow older, they begin to crave what other children have. This is a huge motivation for trying again and we may be doing a milk trial soon as he will be starting school in September.
    As always I gain a huge amount of support and reassurance from your post which allows allergy parents to discuss our experiences and swap notes, thank you.