Emma's Story

I originally shared this story a week or so ago, unadulterated and 'in the raw', at the bottom of another post, about Croydon CCG's decision to charge for specialised infant formulas, which you can find here. I am re-sharing this story (only slightly edited) because the fight is by no means over and in the hope that people who read it will realise:

1. Food allergies are real.
2. Nobody wants their baby to have food allergies.
3. Correct diagnosis of food allergy can be hard to come by.
4. Undiagnosed babies with food allergies can become very poorly and can develop long-standing feeding problems, which can affect their growth and development.
5. With budgets to maintain, Doctors can be reluctant to prescribe necessary formulas.
6. Parents of babies with food allergies often have to fight for the correct treatment and this can be extremely stressful.
7. Specialised formulas are necessary for babies with allergies. There is safe no alternative that can be obtained at the supermarket for the same cost as normal formulas, as Croydon CCG and Richmond both maintained in their proposals. If only it were that simple!

Anyway, this is...


Emma's story:

Emma has two children a boy and a girl. Her eldest did not have his milk allergy picked up for the best part of a year. Despite being very sickly; having blood and mucus in his stools; and being very unsettled, Emma, seeking help for her son, got nowhere. He also cried for hours on end, had raw eczema and wheezed. Then, at the age of eight months, Emma's son had some egg, to which he reacted very badly and they had to call the paramedics. At the follow-up hospital appointment (which didn't take place until he was 10 months old), Emma described how he had been as a baby, and he was finally diagnosed with a milk allergy. She was told, "We're not saying you were fobbed off by the GP/Health Visitor/Midwife etc.. But you were!'  He is now also soya free. 

Quite understandably, when Emma was pregnant with baby number two, she was worried her new baby would also have food allergies, but again, everyone said she was fine. Again she was told that the symptoms that began to appear were probably just colic. Emma thought different, however, but it was only when her (by now, very unhappy) daughter was 10 weeks old; suffering with blood in her stools, constipation and diarrhea, did Emma manage to get a second opinion from a Doctor. 

As a result of this second opinion, Emma and her daughter were referred to hospital, where Emma's suspicion's of a milk allergy was confirmed and her daughter was prescribed Nutramigen. By this stage, Emma's daughter had pretty much stopped feeding, as she now associated milk with pain. She had lost a lot of weight and it took a long time to get her feeding better and her growth up to the second centile. 

Once her daughter reached 6 months Emma was advised to switch formula to Nutramigen 2, and, whether it was coincidence or not, her daughter started feeding much more. To her shock, by the eighth day, Emma realised that they were starting their fourth tin and she only had four more. Knowing that it took her Doctor up to 48 hours to issue a prescription and that the pharmacy would have to order it in, which could mean a few days wait, Emma got straight on the case - and asked her Doctor for more milk. 

More than just baby milk, this is vital medicine!

When Emma rang the surgery the next day to see if her daughter's prescription was ready, the staff at reception told her that the Doctor had left a note to say she was only allowed eight tins a month, and she would have to get an appointment to discuss it further.  The next day all the appointments were gone, so Emma arranged an appointment the day after. 

In the meantime, Emma's and her husband and calculated how many tins a month my baby would need if she drank 35 oz a day (which is the amount the consultant said she should be drinking at 4 months). The amount she came up with wasn't allowing for any wastage (you can only keep formula for an hour or so, once it has been made, so any left-overs need to be disposed of and fresh milk made up). 

Once she was at the appointment, Emma's problems were not over. The Doctor listened to Emma, but said she should be weaning her daughter. He said he was only going by government guidelines, and did she realise it was cost £11 per tin? He also emphasised that she was spending public money, which made Emma feel awful. 

Emma tried to remain calm and explained she was only trying to feed her baby and that she actually started trying to wean her daughter at 5 months, because she thought maybe she would be a better eater than drinker, but that so far she was not interested. Reluctantly, the Doctor issued her a 'one-off prescription' for eight tins, but would not issue any more without a letter from the consultant.

The next day, Emma rang the consultant, but he wasn't available and she was told he would have to call her back. Then Emma had an asthma attack, and was so poorly that she was admitted to hospital. At this point, she felt no more strength to keep pursuing the consultant, as she felt the stress was contributing to her being so ill. 

Fortunately, the consultant soon called back, and said it was not a problem. He worked out how many tins Emma's baby would need the same way that she had. He did say to keep trying to wean her daughter, as it's quite common for babies with allergies to develop food aversions, but said that she could have thirteen tins in month and that he would write to the Doctor.  So finally it was all sorted and the panic was over.  

Emma told me:

'I just found it so hard last week, when I felt just like when I knew she was allergic, but couldn't get anyone to listen to me. 

I think we have enough to deal with, and enough worries with our allergy babies, without extra stress like this.  I would love to have a baby that is not allergic, but that's not the case. 
I hope other people manage to get the help they need.'


And those of us with 'allergy babies,' who have struggled to get help, know just how she feels. 


If this story has affected you in anyway, please join the Campaign for Milk Prescription Access, which aims to try and prevent prescription changes in the UK, that could make it harder for mum's of babies with allergies to get access to the formula they need. The formula is both incredibly expensive and incredibly necessary. At the moment not all areas are expecting mums to pay for their formula, but in some areas this is already starting to happen. 

The Campaign website can be found here. They are also on Face Book and on Twitter at @cmpa_UK. 

And you can sign a petition (not started by us, but related to our campaign) by following this link.

Related posts:

Should parents of dairy free babies be forced to pay for prescription milk?

The Devil's in the detail - a response from Croydon CCG...

FAQ's Why can't mums of allergic babies breastfeed their babies instead?

The Devils in the detail - a response from Croydon CCG...

The Statement...

Following the recent publicity regarding Croydon Clinical Commissioning Group's Consultation (which was featured in a previous post) the CCCG were approached and asked for more clarity. They responded with the following statement, by Dr Tony Brzezicki, Clinical Chair of NHS Croydon Trust:

Please note: The inclusion of a specific term - 'cow's milk allergy'. The specific line that interests me is...

'in particular, the high cost for products for parents and carers of babies with a cow's milk allergy who may need Neocate or Nutramigen.'

This is important as various of their documents relating to the proposed prescription changes seemed to use 'lactose free' and or cmpa, without really being clear what these terms mean and until now have not identified any formulas in particular. Let's unpick this line a bit:

Lactose Free...

If you are Lactose Intolerant that means you can't tolerate the sugars in milk. 

Lactose free formulas are readily available in supermarkets and are similarly priced to normal milk formulas. That seems reasonable enough. I think few people would quibble with the proposal put out by CCCG that people probably should pay for these themselves, without getting them on prescription.


Cow's Milk Allergy...

'CMPA,' or 'cow's milk protein allergy,' to give it its full name, is completely different. CMPA is an allergy to the proteins in milk, which is recognised by NICE, as a medical condition, and about which NICE have provided Healthcare Professionals a great deal of detailed information (see here). 

NICE make it clear that infants with this condition should strictly avoid all forms of milk protein, except in extensively hydrolysed formulas - such as Nutramigen, Similac Alimentum and Althea. However, some babies cannot tolerate even these hydrolysed formulas, so for these babies, NICE recommend an Amino Acid Formula or AAF, such as Neocate - as mentioned by name in the above statement. These are the ones about which many allergy mums are worried that the CCCG mean, when they say that parents should pay for their own. 

Taken from NICE recommendations.

  
Nutramigen and Neocate...

Currently 'Nutramigen' and 'Neocate, ' the two formulas mentioned in Para 5.1. of the CCCG's statement), are often prescribed for children with CMPA. As accepted in the statement above, they are very expensive. 

Puramino - formally known as Nutramigen AA - an amino acid formula - 400g

So we can see that the assertions by the original proposals that there were suitable formulas available in the supermarket for cmpa, at a similiar price to normal formulas, are erroneous. In fact there are no suitable formulas suitable for cow's milk allergy that are available in the supermarket at all, only those that are suitable for the lactose free. The soya formula that can be found in supermarkets is not recommended by NICE for the treatment cow's milk allergy.

Allergy mums are not freeloaders. Many mums have expressed a willingness to contribute towards the cost, but with at a price tag of £45 or so (for a tin that is much smaller than normal formulas), it is prohibitive for most, to bear the full financial load. 

Nutramigen Lipil - 400g

A way through for CMPA??

There is, however, a line in their Consultation report which refers to GPs being able to prescribe unspecified 'specialised formulas', once a recommendation has come through from a Specialist, see here:

Taken from Report to CCCG Governing Body Meeting in Public 17 January 2017

but only for those who meet certain 'medical conditions'. 

Interestingly enough, if you read the Report regarding the consultation, in full, there seem to be hints that GP's are suspected of having over-prescribed EHF's and AAF's in the past, which is why they are keen for specialists to identify the specific conditions that require the formula.

CMPA is not listed as one of those conditions, although 'faltering growth' which often accompanies untreated CMPA, is. However, 'faltering growth' does not always become immediately apparent in CMPA, which can manifest itself in various ways anyway. So here lies a problem.

And, what's more, anyone who has ever had to wait for an appointment with a specialist, will know just how hard that wait can be. If everyone has to wait for an appointment with a specialist, in order to get an initial prescription, I suspect those waiting times will only increase. If you have a poorly baby who desperately needs a prescribed formula, what are you supposed to do? 

I really worry that desperate parents will end up looking for alternatives in all the wrong places - funnily enough, something that has actually already been identified in the CCCG's report!


Another problem...


Moreover, originally, in their proposals, the CCCG appeared to suggest, that mums affected by their proposed cuts could use Healthy Start vouchers towards the cost of the milks they would need to purchase, but it now appears in their report (but not in the statement above) that this is not the case and there would be a shortfall, which they had not foreseen. This suggests that those in the local area who responded to the consultation did not have full access to the facts - perhaps because those putting together the proposals and the report for the CCCG did not fully understand the implications themselves.


Since this statement was released, it seems that Croydon CCG have gone remarkably quiet, despite the desperate attempts of many to obtain clarification of what all this means. It may be that Croydon CCG are only now beginning to get to grips with the implications themselves.


So what now??

As these proposals have yet to be framed into an 'implementation plan', it is hoped that there will be some room for re-working, and, as I understand it, from various Healthcare Professionals I have approached, various professional bodies intend to attempt to liaise with CCG with this in mind.

As there have been no further statements from the CCCG since the one shown above, I sincerely hope they are now currently working on a way to resolve the situation, before commenting further. 

We shall just have to wait and see.


If you live in the Croydon area...

... and wish to respond to the CCCG's Statement, as well as those points listed above, you may like to consider the following points:

1 1. That, if, until recently, you were unaware that the consultation was taking place (in fact around 346 people responded to their consultation – out of an area the size of Croydon -pop. around 398,000) in your opinion, this would suggest that either it escaped peoples' notice due to a lack of publicity, or that people failed to realise the impact of some of the decisions potentially being made. Let's make that clear - this consultation elicited responses from less than 0.1% of the area (less than 1 in 1,000), therefore hardly representative of the local population!

    2. The original consultation statements were unclear - there was some confusion as to the terms used, which conditions were exempt and which milks were being considered for withdrawal. Also, there was a distinct lack of supporting evidence to back their claims about the easy availability of alternative milks in supermarkets (although the report did go to the trouble of providing data re. other proposed cuts e.g. gluten free food on prescription and vitamin D prescription). 
     Rather the consultation engagement document and public meeting slides confidently asserted that alternative cows milk and lactose free infant formulas were widely available at similar cost. However, according to the CCCG's own statement, it is now evident that higher cost specialised formula with no readily available alternative are within scope of the proposals, and were not presented as such. This is particularly evident if you read their 'easy-reading' copy of the proposal documents (see here P.6). This may well have materially affected the consultation outcome for this question as it was posed as, to the uninitiated, it would look perfectly reasonable, to agree to the proposals. The 49% agreement level could have been significantly lower given this. 

   3.  Although allowance has been made within CCCG's consultation report (see here, P. 99 of 332), for GPs' to prescribe these formulas, once they have been recommended by a Specialist, in many instances, people have to wait a long time to get such an appointment. This could lead to lots of babies being put 'on hold' before they can get hold of the treatment they need – namely an appropriate specialised formula - which could make them very poorly. In desperation, some people may well attempt to seek alternatives from unsafe sources. Therefore, the impact on people’s health and well-being as a result of their proposals being implemented could well out-weigh the proposed savings.

If you do send an email, please stick to the facts, and tell them it’s a formal complaint.

Then:

• Copy in your local MP and his main political rival in your local area.

• If Croydon CCG refuse your complaint, you can contact the Parliamentary & Health Services Ombudsman (see here).

• Sign the petition circulating (see here).

If you do not live in the Croydon area:

• Those outside the Croydon area need to be aware of how this consultation process is spreading - other CCG's have already been through this process and are implementing changes. Each one has reached slightly different outcomes, so please make sure you find out and make your voice heard if/when it reaches your area. It may come under a general heading to do with 'Changes to Prescriptions'. 

• Find your CCG here. You can email them, to find out if this kind of consultation has, or is likely to be taking place locally.

• Richmond CCG (London area) are undergoing the same consultation as Croydon, right now. See here for further details. You have until February 3rd 2017, to respond to Richmond CCG.
• 
  

Update:

A campaign group has been set up to help families affected by potential changes. Called The Campaign for Milk Prescription Access, they hope to help counter the proposed changes and help all who are being expected to pay for their own milk. The campaign group are active on Twitter and Face Book and also have a website, see here.

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!

We're going through changes - the dairy free 'Baby' starts school!!!

Well, that's it, then!

'Baby' is really definitely NOT a baby any more! 

Yesterday she started school!!!!

That might shock some of you - after all, the blog is called Dairy Free Baby and Me, isn't it? 

As she was - nearly five years ago!

BUT the eagle-eyed among you, or those who have read my Twitter bio, may have spotted references from time-to-time which have given the game away.

The thing is, I originally called this blog 'Dairy Free Baby and Me' because that's where those of us who have little ones with milk allergies begin the journey - whilst they're so small and new and we're so unprepared for it! I wanted to help others who arrived (as we did) bang, smack right in the middle of dairy free territory without a map, guide or reference point! 

Having given yourself a blog title, you then have to kind of stick with it - so people know who you are! My way around this, was to stick 'Baby' in inverted commas, to make clear it's an identity, rather than a description! But I've no idea how clear you found it!

Me, on the other hand, I'm all too aware of how my little one is growing and developing. 'Baby' has most definitely not been a baby for some time now - walking, talking and growing in height as well as independence!!

So now I'm torn.

I'm torn between rejoicing in the fact that despite her milk allergy she's developed so well (another parent complimented me on this, just today, in fact)  and in the fact that I finally have ME back - head space, time to THINK, sort, throw out stuff, shop get a hair cut etc. etc. without the constant, 'Mummeeeee!!' in the background and sorrow at 'losing' my (usually) irrepressibly cheerful little girl companion. 

Okay, okay, I'm not losing her altogether, I know THAT, but I know we'll never have that precious pre-school time back again. AND, I'm wondering constantly how she is. 

Is she lonely, being picked on, hurt or hungry? Or is she happy, cheerfully playing with new friends? Does she understand the teacher, or the instructions given by the dinner ladies? I just hope that she's SAFE emotionally, physically and allergically (if I can put it that way)! Funnily enough, the last thing I'm actually concerned about is how well she'll learn!!

The thing is, I've done my best to prepare her for this time: I've fed, clothed and cared for her day in and day out for nearly five years - I've been every inch the 'present mum.' She can now use the toilet (that took flippin' ages); make friends (despite being an only child, we've been careful to help her socialise with others in a range of situations); all along she's been trained to know what she can/can't have to eat, as well as how to ask if something is safe. 

I haven't taught her to read or write very much at all, beyond her name - mainly because I didn't want to put pressure on her and switch off before she even started. It was also because really I (not so secretly) wish that England was more like Finland - where formal schooling doesn't begin until seven. I've heard, that come Christmas of their first term, the Finnish children can all read and write, just fine!!

I am confidant that 'Baby' is in a great school. We've chosen her school carefully - we've scoured websites, been to lots of open days, asked questions, got recommendations from friends etc. etc. 

The school where the head teacher looked at me blankly (when I asked what sort of arrangements they had in place for children with a milk allergy) and replied, 

'Well she can have packed lunches, can't she?' 

was crossed straight off our list... in catchment and rated 'Outstanding' by OFSTED or not!!

'Baby's' teacher is great. She's an experienced lady, who definitely knows her onions (me, being a 'resting' teacher, grilled her in advance). The class size isn't too big. There's soya milk and dairy free snacks available at break time. Provision is made for children with allergies in the school lunch (including dairy free ice cream, when others have their ice cream), and the school has procedures in place - a clearly displayed board on the wall, of the dining area with photos of children with allergies - listing their allergy/ies, contact numbers etc. in case of emergency...

So, even though the school is all good, that doesn't stop me, well not worrying exactly, but... concerning - if you know what I mean (I know that's not grammatically correct, but it'll have to do, for now)!! 

'Baby' hasn't cried - not yesterday when I left her in the classroom, not this morning when I left her again. Yesterday, she used the toilets, she ate her lunch, all as she should. No nasty reactions followed overnight. If she didn't exactly skip down the path, she seemed fine about going to school this morning.

Today, on arrival, she was greeted by name by another little girl. That was nice!

I haven't cried either and I'm beginning to relax...

I'm also torn in regards to the blog. Question is, now what? For me, for blogging?

These questions will have to wait for a bit, I've got certain things I need to do - one of which is a move to complete, now we've sold our old flat (the one I bought into when I was single). Then, I'm pretty sure I'll be back on these pages... maybe looking for another name or identity. After all, 'Baby' is NOT a baby any more, is she?

But she's still dairy free!

*Sigh!*

So much for growing out of it by the age of two, then! 

And thanks to AlproSOS... they all lived happily ever after??

I don't know about you, but I love a story with a happy ending, don't you?

The problem with a story with a happy ending is that unfortunately it has to have a miserable bit, before everything gets resolved! 

ONCE UPON A TIME...

This tale all started back in November (for those who don't know), with the announcement that Alpro had decided that in order to expand it's operations, it was going to move factories and this would result in nut milks being manufactured alongside soya milk. BUT, not only would this affect their milk, but other dairy free products such as custard, cream and yoghurt. This dealt a huge blow to families in which a family member was allergic to both dairy and nuts. Especially, when they realised that Alpro produced soya milk for many supermarket 'own' brands as well as for Provamel. 

It was a particular disaster, for families with young ones, who were relying on reliable supplies of the Alpro Plus 1 soya milk which is specially formulated for little ones - there is no other like it on the market. See why here.

Specially formulated for little ones

There was a partial resolution to this, when Alpro decided to secure the safety of this milk, back in March 2014. However, the issue of desserts and yoghurts still remained.

Many schools/nurseries use Alpro Soya products.

I was also concerned about the fall-out for children who were dairy free and who were mixing with nut allergic children in schools/nurseries etc. I was worried in case that meant that they would no longer be allowed to eat Alpro dairy free desserts/yoghurts within those settings and was quite frankly dismayed at how long it apparently took some members of the dairy free online community, some allergy organisations and some health care professionals to jump on board. 

I see it this way - if one part of the allergic community suffers, some kind of discrimination/barrier/injustice then ultimately we all do... at some point. As John Donne wrote in his famous poem:

No man is an island entire of itself; every man

is a piece of the continent, a part of the main;

We all need to work together to create understanding among the many out there, who just don't 'get it' and also to bring about CHANGE!

HAPPY ENDING!!

It just goes to show what will happen if we do all work together, because yesterday, after months of uncertainty and misery for the families that were directly affected, Alpro SOS was finally able to announce that Alpro was going to make the changes for which we'd all been hoping and praying and pushing... well, some of them at least!!

See here:

Dear AlproSOS

As you know, a year ago we decided to label all our plant based products with a 'may contain traces of almonds and hazelnuts' claim. This was to give consumers advance warning of the integration of products containing almonds or hazelnuts into its production facilities.

After thorough investigation and without compromising Alpro's ethical aims of bringing delicious and safe products to the market, we are PLEASED TO CONFIRM THAT WE WILL BE GRADUALLY REMOVING THE 'MAY CONTAIN TRACES OF ALMONDS AND HAZELNUTS' CLAIM FROM OUR SOYA, RICE AND OAT DRINKS AS WELL AS OUR PLANT-BASED ALTERNATIVES TO CREAM AND DESSERTS.

As part of a major investment in our facilities, we will ARRANGE OUR CURRENT PRODUCTION LINES TO BE DEDICATED TO PRODUCING SOYA, RICE AND OAT DRINKS OR ALMOND, HAZELNUT AND COCONUT DRINKS. ANY AVOIDABLE RISK OF CROSS CONTAMINATION IS THUS EXCLUDED, WHICH MEANS THE WARNING CAN BE REMOVED from our soya, rice and oat drink products and our plant-based alternatives to cream and desserts.

We apologise for any confusion relating to the nut claim, but our intention regarding labelling has always to keep consumers fully informed of the changes as early as possible. Now that production plans have changed, the claim is no longer necessary on soya, rice and oat drinks and our plant-based alternatives to cream and desserts.

These recent decisions and measures will allow all consumers to continue to enjoy Alpro soya, rice and oat drinks and our Alpro plant-based alternatives to cream and desserts in the future.

Ann De Jaeger
Vice President, Division General Counsel & Corporate Communications

Well almost!!

However, please note, this does not include yoghurts - as of yet!! Alpro SOS are continuing to push for other information too - check out their Face Book page for more information!

Today, Alpro SOS have also been able to announce that the 'sister company' Provamel will also follow suit, and I wish to congratulate all, working behind the scenes at Alpro SOS and thank them for all their hard work. And I wish to thank Alpro too, for considering the alternatives and coming up with some solutions. I am sure that this has required a lot of logistical nightmares as well the reallocation  of some finances! I do hope that they will work to resolve the anomaly of the yoghurts very soon!

The Sequel

Meanwhile, as an allergic community, there is still plenty of work to do!

Supermarkets are still using unnecessary and useless 'may contain' labelling on their products and people with nut allergies are taking their lives in their hands should they dare to travel by airplane.  We need to continue to apply pressure, to help big companies see sense!

What can you do?

Some thing as simple as highlighting it on Twitter or Face Book, or signing a petition on Change.Org can all help. If you feel you could email/write to a company, even better!

Let's make change happen!

Related Posts:

Warning! Alpro soya milk may contain nuts!

Which Dairy Free Milk is Best?

Further Reading:

 Alpro to remove 'may contain nuts' warning on soya products - The Grocer