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?

Signs & Symptoms - back to the start

Signs

 Have you ever noticed these - on your shopping trolley?

Have you ever stopped to take in just how many signs there are around us? Looking for a sign to illustrate this post, I suddenly realised just how many there are - they are well everywhere; it's like an epidemic (just try counting them, next time you go out somewhere). But how many of these are completely necessary - of how many do we actually take notice or even understand? With Baby the signs were there, clear to read - if only I had known how!


Going over old ground
For those of you who have been following the 'story so far', some of what is written in this post will be familiar to you. Sorry if I bore you by 'going over old ground', but I have in mind those new to this blog, who might be wondering whether they or someone close to them might have a problem with milk - in which case this particular post (focussing on what alerted us to Baby's problem) could perhaps prove useful. So, for the purposes of this post, I'm going...

Back to the start

By the time I eventually saw our family doctor, the diagnosis of cow's milk protein intolerance had already been reached and clearly proved. In some ways, I wish I'd visited the family doctor first (rather than the two locums I actually saw) as, when he asked me about her symptoms and I rattled them off, he nodded and agreed that they were classic signs. 


Truth to tell, I'm not entirely sure when Baby first exhibited signs of having a problem, but as we were having other issues at the time (let alone the fact that we were trying to get our heads around having a new baby) maybe I just missed them to begin with. All I know is that I first became aware of soreness in her nappy area, around two weeks into her little life. 'Agh! Lie still!' I would yelp in frustration. Baby would writhe with an incredible show of strength in her tiny frame, and I would struggle to change her. 

As soon as it dawned on me that her resistance was due to soreness, I felt horrible rush of guilt for feeling so frustrated. Immediately resolving to be more gentle when cleaning her up, it took at least a few more days for me to realise that the writhing preceded, not just accompanied each nappy, and that the nappies were rather frequent. Were they too frequent? I didn't know/couldn't be sure however, the signs seemed to escalate - particularly at night. This was when the cycle of feed, cry, nappy, cry much more, feed again to comfort and soothe, seemed to be endless and I was lucky to get a few hours sleep. 

Seeking help

The Hub being back at work was sympathetic but, being able to do little about it (although he did turn to his favourite reference book - the Internet, searching for clues) managed to sleep through. I was exhausted. Quizzing the midwives got me nowhere, neither did two visits to the doctors. I was getting near to the end of my tether, and wondered whether it would do any good to go to A&E - I wasn't sure if it would fast track  us to being seen by a paediatrician or whether I would be dismissed as an over worried first time mum. And then came the decision to see someone about her tongue tie. To get a private referral. 

I sometimes wonder how things would have turned out, had we not 'gone private'. How long it would have taken to get the correct diagnosis - after all I'd already seen two doctors locally. I've met others for whom it has taken longer - although they had different symptoms such as reflux, vomit and eczema. All I know is that the time for which it lasted seemed unbearably long. Part of me felt it must be what having a new baby was like whilst another part of me knew it was wrong. 

Baby's Symptoms

Thankfully we did see the paediatrician, thankfully he enquired beyond the tongue-tie , thankfully he was a specialist childhood allergies, thankfully to him our case seemed pretty straightforward. Once I had described, in as much detail as I could, what had been happening, the paediatrician was able to make a fairly swift diagnosis; the diarrhoea, the writhing prior to a poo (presumably caused by tummy cramps), the frequent explosive blasts of yellowy brown watery poo, all taking place not long after a feed. These, in addition to the sore botty that wouldn't clear up (burning caused by acidic poo) all pointed to one thing as far as he was concerned - cow's milk protein allergy. 

'Testing' the diagnosis

Me, wanting to be sure that he knew what he was talking about (having had two misdiagnosis, I was understandably cautious) questioned how he could be so sure. Apparently, at the age Baby was then, (she was just a month old) the only two likely causes of all her discomfort and distress were an infection or cow's milk protein allergy. Due to fact she was being breastfed, and so young, the infection was the least likely but (to rule out the possibility) a sample was to be collected and tested. Meanwhile, I was to steer clear of all products containing the slightest amount of cow's milk. 

It was this latter course which was to prove the diagnosis. Sure enough, within about three days, the symptoms had vanished and I had a completely different baby. It felt like the miracle for which had been praying. The test results, which were to follow later, merely confirmed what we already knew - there was no sign of an infection.

Other symptoms

The symptoms I have described are common to many other food intolerances or allergies. There are, however, quite a number of other possible symptoms that can accompany the same condition, such as:


Bloating
Flatulence
Reflux/vomit
Feelings of nausea
Stomach rumbling
Colic
Constipation
Eczema
Hives
Wheezing
Headaches
Dizziness
Lethargy
Itching
Runny nose
Swelling
Weight loss (if left)
Malnutrition (if left)


Interestingly enough, it seems that individuals can exhibit a different set of symptoms at different times of their life. So a young child might begin by exhibiting symptoms affecting the gut, but later (when they're older) have the kind of reaction that affects breathing.

How can one know for sure?

If you are trying to work out whether you or someone else you know might have this problem, it can be quite tricky to find out. It's easier when they're a baby, as problems with cow's milk among babies are fairly common. It is possible, however, for symptoms to go unnoticed, or for people to develop symptoms later in life. Older sufferers have much more variety in their diets and so identifying the cause of a problem, can be like looking for a needle in a haystack. So what about diagnostic tests?


Quite a lot of people have heard of skin prick tests. Medical opinion is divided on how useful they are and blood tests don't always detect problems that do exist, as I found out following the tummy bug I had the other year. Part of the problem is that such tests work on detecting a response in the immune system, which might occur with an allergy but not with an intolerance.


A first step towards pin pointing a problem might be to keep a food diary - listing everything that is consumed, alongside any possible symptoms. Doing this can help to identify patterns and perhaps the cause. Following this, excluding 'suspects' from your diet  (one at a time) can help confirm what is triggering the symptoms, and therefore what is causing the problem. 


These so-called 'exclusion diets', such as the one that Baby and I have had to follow are most reliable way of confirming that a food is causing a problem but it is recommended that these are carried out under medical supervision, as are food challenges (where following an exclusion, a small amount of the 'problem' food is reintroduced back into the diet). This is because otherwise you could be missing out unnecessarily on important nutrients.

So how do I know?

Although the blood tests that I had (following my tummy bug) the other year proved that I wasn't coeliac, the fact that wheat along with other certain foods caused me intestinal pain and dihorrea, (accompanied by headaches when the reaction was particularly strong) was enough to convince the doctor that I was intolerant to some foods. Like with Baby's problem the unknown factor was and remains - whether the intolerance will be short lived or last for life.