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?

Finding the perfect formula for the dairy free baby

Breast is best, right? 

Well, I am a big fan of breastfeeding, BUT sometimes our boobs don't work, or we have to go back to work, or we don't produce enough milk, or... well for a hundred and one reasons, there are times when for some reason or another, with the best will in the world, we need a formula to feed our little ones.

In my case, it was because I had such painfully cracked nipples, that for a while, I needed to ease up a bit on breast feeding and top up with formula.

If you've just discovered your baby is allergic to cow's milk, you might wonder what on earth you can feed your little one - after all the only alternative to breast milk is cow's milk formula, right??

Well, not quite!!

There are formulas that are suitable for a dairy free baby

There are some options out there, that might be suitable for your little one!

Before we explore them, though, let me make it quite clear that contrary to what some might say, you do NOT have to give up breast feeding if you discover your little one is allergic to milk. You may have to remove dairy from your diet whilst you're still breastfeeding - as the proteins from cow's milk can pass through your breast milk (although this is not necessarily true of everyone, as your body breaks down the proteins to some extent), but it can be done. I know, because I have done it! Check out these posts, by following this link, if that's what you wish to do. 

What's out there:

Soya Formula

There are formulas that are completely dairy free, such as SMA's Wysoy, which is made from soya. Soya has been a popular non-dairy choice for years, because the proteins are so similar. However, because they are so similar, a large percentage of children with an allergy to cow's milk, might also be allergic to soya.  

The other problem with soya, is that concern has been expressed about phytoestrogens - naturally occurring oestrogen contained within soya. Because of this, soya formula is not recommended by the BDA for any babies under 6 months of age, or any boys under the age of one. The concerns are that the plant oestrogen could affect boys' future fertility or prolong girls' future menstruation.

Also soya milk contains glucose, which can cause tooth decay. Lactose (the sugar contained in mammalian milk) does not.

Extensively Hydrolysed Milk Formula

If your baby has been diagnosed with a cow's milk allergy they may be prescribed what is known as an 'extensively hydrolyzed milk formula' of EHF, such as Nutramigen 1 or Aptamil Pepti. These milk formulas are made with cow's milk, but the proteins in the milk have been broken down into tiny pieces, to enable children with milk allergy to cope with them. They come in two kinds - either whey-based (which also contains lactose) or casein-based. A dietitian or allergy specialist should be able to work out which is best for your little one. 

Most babies with cows milk protein allergy (around 90%) will be fine with formulas such as these, but sometimes babies with a milk allergy are so sensitive, that they cannot even cope with a hydrolysed formula - in which case they may be prescribed an AAF - amino acid formula.

Hypoallergenic Amino Acid Formula

An amino acid formula, such as the one prescribed our baby (Nutramigen AA) does not contain cow's milk protein at all, but amino acids - the bits (often referred to as the 'building blocks') that make up protein. Because this formula does not contain milk protein it is also lactose free. If you want to know exactly what is in a formula such as Puramino (formerly known as Nutramigen AA), see here. It makes for interesting reading!!

The other formula you are likely to come across in the UK is by Neocate - LCP.

These formulas are the first line of medication only for severe cases of milk allergy. If your GP informs you he/she cannot prescribe it, until it has been recommended by a specialist, this could be because their local prescribing guidelines dictate that they are only to be prescribed in secondary care.


Plant-based Milks

So-called 'Plant-based Milks,' such as almond or coconut, are not considered suitable as a main milk drink before the age of 2. This is because they do not provide enough calories, protein, or the desirable balance of vitamins and minerals required by the very young. They may however be used in small amounts, in food, once you have started weaning, providing your children is not allergic to any of the ingredients.

Points to note:

1. The first formula that you are prescribed may not be the right one for your baby. So if it does not seem to work for your little one, keep talking to your Doctor/Dietitian, they can probably try your baby with another. However, bear in mind, also, that it may take days or even weeks for the effects of the cow's milk protein to disappear. Another thing to note is that these formulas may cause your baby's poo to be a bit loose and appear a bit green!

2. Around six months a baby's bitter taste buds develop. It can be harder to introduce a formula at this stage, as breast milk is naturally sweeter. 'Baby' went off her formula around this time. Although our dietitian tried to help by introducing another formula, she didn't take to it. Unfortunately, I wasn't aware (at that stage) of how it was possible to gradually introduce a new milk, or that it is possible to try and disguise the taste with flavouring such as a non-alcohol based vanilla extract (apparently breast milk tastes like vanilla - see here).

3. Plant-based milks, such as Koko, Oatly or similar, are not suitable as a main milk drink for babies. This is because milk is the means by which babies gain all (pre-weaning) or most (up to the age of one) of their nutrition. Plant-based milks do not contain enough calories, or other essential nutrients. You will need a prescribed milk formula for children under the age of one, who are not being breast fed. 

4. Goat milk formula, such as 'Nanny Care,' is not considered suitable for children with a cow's milk protein allergy, because the proteins are so similar. In one study, 94% of children who were allergic to cow's milk, were also allergic to goat's milk.

5. Some other potential drawbacks with hypoallergenic formulas are outlined here.

Related post:

Which dairy free milk is best?

Further Reading: 

Suitable Milks for Children with Cow's Milk Allergy - BDA Fact Sheet

Living with cow's milk allergy - what do I feed my baby?

Suitable infant formula for babies allergic to cow's milk 

NHS Choices - Can I give my baby soya-based milk formula? 

Find a formula that's right for your baby - Baby Centre