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...

Challenging Baby Again!

Day Four! 

The end of Day Four, to be precise!

I'm finally allowing my hopes to rise.

We're challenging Baby again. It's a bit overdue. I'd put it off due to this or that - you're meant to make sure they're completely well, for one thing, but also I was waiting for a time that was convenient. Holiday time certainly wasn't!

A 'challenge' by the way, is the means by which you test whether an allergic person can tolerate the food to which they've been allergic. If you're likely to have an life-threatening anaphylactic reaction, this would have to be carried out in hospital. 

'Baby' has had a Non-Ige allergy. This means her reactions are delayed. Not life-threatening, but real nonetheless. So our challenges - agreed with our dietitian - take place at home.

It wasn't a planned challenge, by any means. We were out. Someone mistakenly gave her a biscuit. They had no idea she was dairy free and for once, she didn't ask. Hence I found her happily munching on a malted milk. 

One of these:

'Cow biscuits' as they're otherwise known!

'Too late!' she uttered gleefully when I asked her about it.

She certainly enjoyed it.

'Oh well!' I thought, 'there's not much I can do about it now. We'll just have to go along with it and see what happens.'

So we did... and nothing happened!

'Oh!' I thought, 'well in that case, let's try another and see what happens.'

There was only one problem - I had no Malted Milk biscuits in the cupboard, so I bought a pack from Poundland. Previous experience (see here) suggested we weren't going to get very far, so I didn't want to spend too much on them - just in case the rest of the packet was going to waste. I made sure I checked to make sure they had milk in them (sometimes cheaper biscuits don't).

So anyway, we tried again... and she was fine with that one too!

No tummy ache, excessive wind, disturbed sleep, sore bum or dodgy poo!

Yesterday she had a rash, on the front of her torso, but it turned out that it was just heat rash. Left to run around without her clothes and with a fan on, it disappeared within an hour or two!

'Baby's' itchy rash

Then she had a tummy ache late afternoon, but she hadn't eaten much lunch, and it soon disappeared once she had eaten a nice cream! 

One thing I have learned with 'Baby' is that sometimes a tummy ache might not necessarily be a sign of a reaction. It could be because she's hungry, constipated, got a tummy bug (she's had a few), or because she's about to produce a poo. So every tummy ache has to be considered in context and sometimes we just have to wait and see what will happen.

If it is milk related, then repeated exposure has meant tummy aches and dodgy poo and so on become more frequent, to the point where they can no longer be ignored. 

But today? Still no signs - nothing!! 

So it's a BIG FAT HUZZAH and Hallelujah!!

Originally we were told 4 or 5 days, with a biccy, but I'm still playing cautious, until after the weekend. Then I upping the anti - we're going to two malted milk biscuits, as per the 'Milk Ladder' 

For those of you not aware of what a 'Milk Ladder' might be, its a programme for reintroducing milk. Starting with baked milk, in biscuit form (baked milk is more easily tolerated than straight milk), it progresses in twelve stages, to the point where you're on the real white stuff - y'know - cow's milk.

Who knows how far we will get up the ladder on this occasion, that's still to be determind, however I was interested to read this article, which states:

 it appears that many children are taking longer to ‘outgrow’ their milk and egg allergy, a period of time that corresponds to the increasing utilization of strict allergen elimination diets for the treatment of children with these allergies. Recent studies indicate that about 80% of young children with milk and egg allergy can tolerate these foods in baked forms, that is, extensively heated proteins that have become denatured, and that the addition of heat-denatured proteins into the diet actually leads to more rapid development of tolerance to all forms of milk and egg

So, now that 'Baby' has started to manage some baked milk is a good sign. Up 'til now this has not been the case.

I have to tell you that now that she is older 'Baby' has become more aware of how she is affected by her allergy to milk - how much she is missing out on. She is ECSTATIC that she can now have Malted Milk biscuits (I don't blame her, I used to love them too). 

Yesterday, she told me she wants a carton of milk for Christmas.

Bless her!

Here's hoping!!

Challenging Baby - the adventure continues??

Whoever, first compared life to a roller-coaster was quite right, weren't they? Give that person a gold star, I say! After all my nervous excitement, the other day, it seems like we're back to Numero Uno, Square One!

Not daring to trust that Baby had truly passed Stage One - the biscuit-containing-milk-as-an-ingredient challenge, I decided to try Baby out with the biscuit that's always been her stumbling block before. Why? I don't know. I just had an inkling that until she conquered this one, she wouldn't be ready. Perhaps one of the tastiest biscuits EVER invented, it's the good old Malted Milk, or 'Cow Biscuit,' as it's otherwise known.

Instead of opting for the traditional shape, though, I bought a packet containing several small bags, as, this way, if the challenge failed, I hadn't wasted a whole pack of biscuits and could keep the rest of the sealed bags for next time.

You can get them in little bags, these days!

I discovered, on opening the first pack, that there six of these inside:

They look fun, huh?

Six seemed a bit excessive for a first go, so we gave Baby three - which we judged to be about the same as one normal Malted Milk biscuit. In hindsight, maybe one would have been better, for a first go! I would have loved to have eaten the other three, but, being gluten free now, I couldn't, so The Hub had the rest. She, (quite predictably) loved them and was most upset with Daddy for eating the other half of her pack!

Once she'd eaten them, all we could do was sit and wait, to see what happened next. Baby seemed fine, so we tried again the next day. That night she didn't sleep that well. But Baby's often disturbed in her sleep and had a cold, which was more likely to make her restless, so I pushed that to one side. She passed wind, quite a bit this morning (and quite loudly, too), but I put that to one side. After breakfast she complained of tummy ache, but she was overdue a poo, so I put that to one side too.

When she did her poo, though, (avert your eyes if this is too much information for you) it was quite soft, not hard (as it would be if she was constipated) and it was more yellowy than normal. It was the familiar mustardy yellow colour caused by milk. It stank to high heaven too. As I cleared it away, I could see that her skin was beginning to look irritated. That's when I knew that the game was up!!

When Baby has a nappy like this, it's important to clean off all traces of poo really thoroughly, preferably with cotton wool and water. Any poo left on the skin will continue to irritate, as it contains acid. In fact the best thing to do, is really to dunk Baby in the bath. Usually, this leaves the skin nice and clear. Once the skin is clean, it needs a barrier to protect it - in the event of any further episodes. Vaseline is undoubtedly the best. A thick layer of that really does the trick.

I'm so glad I didn't go straight to Stage Two. She obviously wasn't ready, yet. It would have probably have left her very discomforted. It leaves me wondering though - whether we need a list of biscuits, ranking them in order of those least likely to affect one to those most likely. That way we could work our way up the scale, until Baby's ready for the next stage. If you know of one, do let me know, won't you??

So, we're back to the drawing board again - at least for now, anyway. Although, not quite! She's never got this far with a Malted Milk before, so she's improving - albeit maddeningly slowly!!

Related Posts:

Challenging Baby!

Challenging Baby!

Well, there's no doubt that 'Baby' has become more challenging recently. Three full-length toddler tantrums thrown today. However, this post's not so much about challenging behaviour as about Baby's response to cow's milk protein.

Diagnosed as cow's milk protein intolerant (we've since found out that this is an out-dated term - she is allergic to cow's milk) at the grand age of one month, we were assured by the pediatrician we saw at the time, that most children grow out of it by the age of two. That milestone passed, the dietitian shrugged and revised the age to four. 

Well, we've not reached that stage yet, but, now that we've moved, I've requested a referral to a specialist, to which surprisingly, the Doctor very swiftly agreed. No sooner had I made the request, than she was scribbling madly on her pad and informing me that the letter would be in the post. 

All prepared for the third degree, and what-not, I was quite taken aback. I mean I was expecting to have to push a little bit to persuade someone or another, but before I knew it, we were back outside the door. And now, we have the letter! 

Well, sort of. The letter informs us that we have a telephone appointment to assess our needs. 'Hmm! Right! Well,' I thought, 'what on earth will that entail??'

So, in order to prepare myself, I've decided to carry out a kind of audit - height, weight and a milk challenge!

Challenges are something that the Dietitian has asked us to do some time prior to each appointment. We can carry them out at home, because Baby's allergy is Non-Ige and so her condition is not life threatening. Therefore if the milk doesn't agree with her, it will make her temporarily uncomfortable, until it has passed out of her system. In the early days, this meant pretty much immediate excruciating tummy pain, much writhing and wailing, followed by watery, explosive diarrhea and a very sore bum (the soreness comes from acid, produced by the stomach) - all within the hour. It's not something we do lightly - no one wants to see their child in pain. It's only on the advice of our medical professionals.*

It's been quite a while since I've properly challenged Baby. This is because we've had some form of accidental challenge (such a another child 'kindly' giving her a biscuit), around about the time a real challenge was due. This has resulted in bad nappies, wakeful nights, tummy aches, very sore botty etc. The symptoms do seem to have got lessened a bit, over time, in that they take longer to appear, and have been a bit less severe, but, as you need to wait four months for the stomach to properly heal, before trying again, progress has been frustratingly slow!

Usually, a challenge might involve Baby eating a 'normal' biscuit. In the past, I've always gone for Malted Milk - mainly because I assume that they must be quite milky, and I've wanted a definite yes or no! The idea is, that if she's okay with it, we try again - at the same time the next day. And then again, for four days in a row. After that, we would go to the next stage...

So far, we've never gone beyond the first biscuit. Tummy pains, combined with a wakeful night and a 'dodgy' nappy next day have shown that things have improved , but (so far) have not resolved.

However, now we're trying again - starting with Jaffa Cake.  

Spot the difference!

There's various reasons for this choice of biscuit:

1. Grandma slipped her one, the other month, thinking they were okay. Actually, my Mum had seen me give Baby one of my gluten free Kelkin jaffa cakes, (which also happen to be dairy free) but she hadn't realised that they were different. Funnily enough, Baby seemed okay with it, I think. So I've been looking for an opportunity to repeat the experience, as a proper challenge.

2. If Baby loves the jaffa cake, but it disagrees with her, we have our own equivalent - so it's not like giving her something and then taking it away from her again. This is quite important at the moment, as, with growing awareness of the World around her, she's feeling the fact that she's different to others, more and more.

3. It's one of Daddy's favourite nibbles, so if she can't have the rest, then the packet won't go completely to waste!!

4. This time, I'm seeing the challenge as an opportunity to add one more thing to the list of things she can eat, rather than see if she's 'better'.

I have to admit I'm feeling kind of anxious about this. The thing is, it seems to be working!!  She's had four whole days of jaffa cakes!! There have been a few tummy pains, in places, but 'Baby' often has tummy pain of some kind. She often says her tummy hurts when she's hungry, or constipated (she doesn't like eating fruit and veg - it's an ongoing battle). I don't think these particular 'pains' have been of the intolerant kind. She's also had some sore patches, but she can get these from having too much fruit juices. I've been slapping on the Vaseline, though, just to make sure.

As exciting as all this is, though, success at this stage means going on to the next stage. That worries me because after all this excitement, it could mean that at some stage we'll come to a stop. I don't want to put Baby through the pain that this could cause. If it doesn't work, there's nothing I can do about it, I just have to wait for the symptoms to pass. BUT if it does, and she's 'better'... Of course I want her to be well (so I won't have to worry about her eating something by mistake) but now I'm beginning to wonder: what if I, having been dairy free for so long, have lost my ability to digest lactose?? I guess we'll just have to wait and see!

* Food challenges should only be carried out under medical advice/supervision. Your doctor/dietitian is the best person to advise you about your particular situation.