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

Government response to the petition regarding baby milk

You may have been following the recent story over Croydon CCG's decision to drop prescriptions for specialised baby formula, including milk for babies with cow's milk protein allergy. If not, you can read about it here and here.

A petition was launched (see here) and the number of signatures reached 10,000 - the limit at which the Government is obliged to look at the petition and decide on an appropriate course of action. The Government response to the petition regarding prescribed baby milk formula has finally arrived. See below:

Government responded:

It is for Clinical Commissioning Groups (CCGs), through their local prescribing policies, to decide what to limit on prescription

Croydon Clinical Commissioning Group (CCG) has confirmed that its decision to approve recommendations to stop the prescribing of gluten-free products and baby milk were made in the context of the financial pressures the local NHS is facing and the need to make savings in the next financial year.

The CCG undertook public engagement on the proposals prior to making its decision, engaging face to face with over 300 individual local residents, patients and professionals at more than 30 sessions. A total of 346 written responses were received through the online and paper survey. The CCG advises that the response to the prescribing proposals was predominantly positive, with over 70% of respondents agreeing that the CCG should stop providing self-care medications.

Croydon CCG recognises the concerns of those people who currently receive these products on prescription and has advised it will work closely with local communities, Croydon pharmacists and GPs to support people to find affordable alternatives.

Department of Health

Click this link to view the response online:

https://petition.parliament.uk/petitions/178087?reveal_response=yes

The Petitions Committee will take a look at this petition and its response. They can press the government for action and gather evidence. If this petition reaches 100,000 signatures, the Committee will consider it for a debate.

The Committee is made up of 11 MPs, from political parties in government and in opposition. It is entirely independent of the Government. Find out more about the Committee: https://petition.parliament.uk/help#petitions-committee

Thanks,
The Petitions team
UK Government and Parliament

From the way the response has been worded, it does seem as though the committee of eleven MPs who have considered the merits of the petition, has actually looked into what has been happening, but unfortunately, the response is as I feared. Basically, they have reached the conclusion that it is up to Croydon CCG to do as it thinks best.

I am disappointed that in their response to the petition the MPs did not consider the limited response to Croydon's consultation (merely 346 - less than one in a thousand, of the local population), or that the wording of the consultation was inaccurate - in stating that specialized baby formulas were the same price as specialized formulas and could be found freely available in local supermarkets.

Also, I disagree with the response of the Government that around 70% were in favour of the prescription changes. Indeed 70% were in favour of changes to self-medication, but that was a different issue, in regards to changes to baby milk prescriptions, the figures are very different. If you read the consultation report, see below for a direct quote (see here for the full report), the breakdown shows a very different figure in regards to the specialized formula - which indicates that if the consultation had been worded accurately, it may well have resulted in a decidedly different outcome.

From page 123, of 332 of the report

Although the outcome, so far, is not what one would have wished, there are still things that can be done. The petition can still be signed and shared as widely as possible. If, in the next four months or so, the petition could reach the 100, 000 response point, then Government would be obliged to consider debating the issue in Parliament. If the petition reaches this stage, we would ask everyone to write to their own MP, as obviously every positive voice in Parliament would count.

Meanwhile, a Campaign group has been set up to try and counter the proposals. It is seeking to raise awareness of the issues and looking at ways in which the decision can yet be challenged. Various professional bodies, Allergy UK and The Anaphylaxis Campaign are also seeking to try and persuade Croydon CCG to reconsider their options.

The Campaign group is also working on ways of helping people in the Croydon area, who could potentially be affected. For the time being, Croydon CCG has said specialist baby milks can still be prescribed where 'clinically necessary', although they have by no means made it sound permanent. The words 'At this moment in time...' have been used, in the communications that I have seen.

If you live in the Croydon area and would like to contact your MP, or complain to the CCG, please contact the Campaign, who would like to work with you. They have also set up a website see here.

The Campaign group is also advising people to keep an eye on their local CCG, in case similar proposals are made in other areas of the UK.

Please follow the Campaign on Face Book and Twitter and share their posts to create awareness. The worry is that where one CCG leads, others may follow. We really are all in this together.

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?

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

This is the debate that has been raging on our Face Book page, since I posted a link to this article the other day. It's clearly an emotive subject. 

For those of you who haven't read the article, it appears that Croydon Comissioning Clinical Group - who make decisions regarding what services are/not provided by the NHS in the Croydon area -  have made the decision to stop providing baby milk (along with other previously prescribed products like gluten free foods). See the CCG press release here). This is a power point slide used by the CCG at their public consultation meetings.

A Power Point slide used at CCG's public consultation meetings.

Please note: It states that this includes milk for children who have an allergy to cow's milk, unless there are 'certain medical conditions'. It's difficult to ascertain what they mean by that.

In case you think I am the only one who finds this wording confusing, read a response to very similar proposals put to Cambridgeshire and Peterborough's CCG (but which I actually think read slightly more clearly than Croydon's), which was made by the BSNA, just last year:

In fact, Looking at the results of this previous consultation, it was only once all the results were in, and the ruling had been made, that Cambridgeshire and Peterborough's CCG (possibly as result of the responses, they recieved) clearly defined what they thought should be covered. See here:

Looking at Croydon's CCG press release, including detail of this kind in the proposal might have been more helpful, especially as all this information is open access online. Funnily enough, however, Croydon do go to the trouble, in the previous section, to compare prices of gluten free bread, available on prescription and in the supermarket. So why not break down what they mean regarding infant formula?

Whilst I take comfort from knowing that in Cambridgshire and Peterborough the ultimate decision looked sensible enough, each area is conducting it's consultation independently, so outcomes may vary, according to the responses returned by the local population.

A summary of responses to the proposals.

Further responses.

Looking at Croydon's CCG press release. It is also interesting to note that their proposals had been up for discussion, but that period has now closed. As this period ran over the busy Christmas period, many people who might have responded, may have missed it. 

Also, although to most families £278,000 that they are planning to save is a lot of money - until you look at the size of the budgets they're managing across the board.

The worry for many mums is, that where one NHS trust leads, others may follow and this may soon become widespread across the country - another 'postcode lottery'.

It was £25 for a tin of Nutramigen AA, a number of years back, when Kiddo was a newborn. I can well remember the shock I felt when the Doctor asked me how many tins I would require, as... didn't I know how expensive it was?? 

Well, we did, as it happened, because we had to pay for the first two tins - which we obtained via private prescription. 

For those of us who, for whatever reason, have had to resort to using dairy free formula, and know exactly how expensive it can be, paying for prescription baby milk seems a shocking suggestion, but clearly there are those who disagree! 


The arguments for/against

As much as I, personally, am against charging for prescription formula, I can quite understand some of the opposing views, and think it is only fair that all sides be heard. Outlined below are some of the major arguments:

The argument for paying for prescribed milk	The argument against paying for prescribed milk
You could eliminate allergens from your diet and continue to breastfeed.	1.      Not everyone physically can breastfeed - for a variety of reasons, which I won’t address here.       2.      Some mothers are advised to give up breastfeeding their allergic child, because the severity of the reaction is too great to allow them to continue whilst the allergens are still working their way out of the mother’s body – we’re talking hospitalisation here!       3.      When children are dealing with multiple allergies, this can be incredibly hard for a mother to achieve, especially when they can’t identify what those allergens are.       4.      Maternal medication/serious illness/death – rare but still requires consideration.      5. Mothers who have to go back to work and therefore have to give up breastfeeding.      6. Prescription formula is not just required to replace breastfeeding, but is often required to replace cow's milk when preparing food, during weaning - particularly for children with multiple allergies, for whom various so-called 'plant-based milks' are unsuitable.
Everyone else pays for their formula, why should the parents of allergic children be any different?	1.      Prescribed formua is much more expensive than normal formula - £25 (or more) a tin, when you can buy a tin of normal formula for around £10. In addition, the tins of prescribed formula are smaller, so more are required. For families on, low incomes, it would be unachievable - it works out at hundreds of pounds a month! Even those of us who are supposedly better off might struggle to cope.        2.      And also, what about milk allergic children in families where they are at risk of neglect (again rare, but it ought to be considered). In such cases paying for expensive formula might come last on the list of priorities, especially where addiction is present.      3. Parents of milk allergic children might then be tempted to source milk via the Internet from unknown, potentially unscrupulous persons, which could potentially put their health at risk. Pharmacies will not accept unused tins of prescription milk, even if unopened, for this very reason.
The NHS is struggling as it is and cuts need to be made.	This is true, however, it could be argued that we can all think of things that we consider ‘unnecessary’ that are currently available on the NHS, e.g. medicines which are actually cheaper to buy over the counter than to obtain via prescription, like paracetamol – children’s formula seems to be the wrong place to start making those cuts.
Go out and get a job/better job to pay for it.	We are potentially talking about a huge amount of money, so this is easier said than done (again for various reasons).
Use a different formula, which is cheaper and can be bought off the shelf at a supermarket e.g. soya or goat’s milk.	1. A large percentage of children who are allergic to milk are also allergic to soya. This is because the proteins are very similar.         2. A study has shown that 92 % of people allergic to cow’s milk are also allergic to goat’s milk - which should therefore be avoided.

A third way??

A third way - popular with many - is that people should pay the 'normal' price for formula and the NHS top up the rest. I do think that even if this suggestion has merits, prescription milk should not be stopped, until alternative routes have been considered. Once it's gone, its gone.

Moreover, it is also argued that having 'free' formula on prescription is only fair, when parents of milk allergic children have to pay so much extra for additional 'free from' products such as  dairy free margarine, cheese, etc. And, what's more, if those children have multiple allergies (many do), and have to pay extra for gluten free, egg free, nut free products as well... well the costs of having an allergic child just go up and up and up!! 


What do you think?

Not sure what to think? Please visit our Face Book page and read some of the stories that our mums  have posted. Please continue to add your comments, either to this post, or to our Face book page. However, I would ask that people remain respectful to other posters.



What can you do?

If this is an issue which chimes strongly with you, there are a few things you can do:

1. As this tweet says you need to contact CCG today at getinvolved@croydonccg.nhs.uk by email TODAY (not much time to get this done). 

Croydon Clinical Commission Group's consultation process has now closed, but...

2. Keep an eye on YOUR local CCG - Clinical Commisionsing Group (see here, to find yours), as they may well be considering the same. Richmond already appear to be on the same path. See here for further details. You have until February 3rd 2017, to respond to Richmond.

3. Write to your M.P and/or Jeremy Hunt - the Secretary of State for Health, who is currently responsible for the NHS.

4. Create awareness and support, by sharing this information as widely as you can.

5. Sign the petition, here. And then share it!

6. Follow the Campaign for Milk Prescription Access on Twitter and Face Book for updates. They also have a website here.

This really, really matters, to many mums and their young babies. 

Read Emma's story below - it's in the raw because I literally haven't had time to edit it yet, but actually, it's probably better, more real, that way.

Please do all you can!



Emma's story:

Hiya, 

Sorry if it's a bit rambling... Feel free to edit as required! 

OK, this is baby number 2 with milk allergy. My son did not have his milk allergy recognised until he reacted badly to egg at 8months and paramedics had to come. We got a hospital appointment when he was 10 months and after talking about how he had been as a baby (V sicky, blood and mucus in poo, v unsettled, crying for hours on end, raw Excema,  wheezing) they said "not saying you were fobbed off by gp/hv/midwife etc.. But you were!  He is also soya free now. 

Understandably I was worried my new baby would have allergy but everyone said she was fine (again) and it was probably just colic (again) only at 10wks after blood in poo, constipation, diahorria, V unhappy baby and mummy did I get 2nd doc opionion who referred us to hospital and they confirmed milk allergy and put her on nutramigen. As she had pretty much stopped feeding as she associated milk with pain she did loose weight and it took a long time to get her feeding a bit better and up to second centile. At 6 months we were told to switch to nutramigen 2,and whether it was coincidence or she just started feeding more, I realised we were starting our 4th tin by only day 8. I realised I only had 4 more tins and as it takes doctor up to 48hrs to issue prescription and pharmacy have to order it I got on the case to ask doctor for more milk. When I rang next day to see if it was ready reception told me Dr had left note to say she was only allowed 8 tins a month and I would have to get appointment to discuss.  The next day all the appointments were gone so went the say after. My husband and I calculated how many tins a month my baby would need if she drank 35oz a day, (which is the amount the consultant said she should b drinking at 4 months) with no wastage (u can only keep it for hr once she starts it) The doctor listened to me, but said I should be weaning her, he was going by government guidelines, did I realise it was £11per tin,  and I was spending public money. He made me feel awful. I stayed calm and explained I am only trying. . to feed my baby and I actually started trying to wean and her at 5 months cos I thought maybe she would be better eater than drinker, but so far she was not interested. He reluctantly issued me a "one off prescription" for 8 tins but would not issue any more without letter from consultant.

I rang the consultant that day but he wasn't available and they said he would call back. I was then admitted to hospital due to my asthma and couldn't handle chasing it as think the stress poss contributed to me being poorly. I have actually had a phone call from consultant today and he said it was not a problem. He worked out how many tins she would need the same way I did. He did say to keep trying the weaning as he said it's common for babies with allergies to develop food aversions but said she could have 13 tins in a month and he would write to doctor.  So finally it's sorted and panic over.  I just found it so hard last wk 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. 

Kind regards, 
Emma