Saturday, 1 June 2013

Diagnosis Murder

One of the programmes on the telly that 'Baby' really loves is called 'Get Well Soon'.

The premise is that a variety of colourful puppet characters visit a very kind and attractive young doctor (Dr Ranj), who listens carefully to his 'patients', and always diagnoses their complaints correctly, whilst informing them about what's happening to their bodies, so that they're not scared.

It has an upbeat and catchy theme tune, with a line that, although I'm sure it was composed with the best of intentions, always makes me wince. It goes something like this:

'... the doctor always knows what is good for you...'

I can't help thinking, 'If only this was always true. If only it always was that simple.'

I'm writing this post, because although I have covered this before, I had a conversation recently that completely shocked me and brought to my attention that here is still so much ignorance about this condition - within the MEDICAL PROFESSION... never mind anyone else!!! 

Don't get me wrong - I'm not knocking the medical profession. I feel not so much anger, as despair - as my diagnosis of the issue is that the problem mostly appears to be down to lack of knowledge. 

'What on earth is going on?' I think to myself, 'that this can still be allowed to happen? And that other mothers are still being passed off as hysterical first-time mothers, to whom motherhood has just come as a bit of a shock, and who are overreacting to the realities of life with a new baby??'

This is the way in which I am convinced they viewed me, when I tried to discuss my concerns about Baby, when, as merely a two week old, she began exhibiting the following symptoms:

  • pretty much constant mustard yellow, watery, explosive diarrhea which leaked everywhere (usually shortly after a feed)
  • writhing due to what looked like stomach pain before, during and after a bowel movement
  • full-volume heart-breaking wailing before, during and after a bowel movement
  • a very red, sore, 'burnt'-looking bottom that nothing seemed to ease
  • very little sleep - short bursts only, day and night (so very little sleep for me too)
  • constantly hungry day and night (because food was passing through so quickly)
  • struggling to maintain weight (if I hadn't switched to feeding on demand, I think she would have struggled to gain weight, even more than she did)

Ten midwives, two GPs (doctors) and one health visitor, failed to make the connection, between these symptoms and cow's milk protein intolerance - now referred to, more correctly, as Non-Ige mediated Cow's Milk Protein Allergy. 

Instead, these were the things I was told:
  • the red bum was due to nappy rash - I should clean it up straight away (I was, what on earth did they think I was trying to do?), use Metanium nappy cream (which actually made her sorer) and give Baby 'air time' without a nappy to get the air to her skin (pretty tricky with constant explosive diarrhoea)
  • my latch (the way a Baby fastens onto the breast - I was breastfeeding) was wrong
  • she had thrush and I should use an anti-fungal cream on her bottom (that cream really hurt her raw botty)
  • because she was born early (three weeks) her intestines weren't fully developed and needed to heal
'Baby' in the early days

I cannot tell you how low I felt at this time - I just do not have the words to describe it. 

It was truly horrible though - looking at our suffering newborn and feeling completely helpless. I mean where do you go, if the GP can't help you??

I  do remember wondering how on earth I was going to carry on and get through it. 

So when I hear of others going through the same thing, it brings back the pain and sense of helplessness and makes me sad, frustrated and angry. 

We need to change this situation! There are others out there who need to know about this. I can't bear to think that there are others who are still having to suffer - because they can't get a correct diagnosis... it's murder...  

Don't believe me? Think I'm overreacting? Well, looking back, I am pretty sure I was suffering from post-natal depression, as a result of all this. Let me tell you that it was only my faith, along with my love for my husband and Baby that kept me from contemplating the route to suicide.

One more thing - if you have a similar story to share, inbox or tweet me. I'd like to include some of your stories, as the symptoms that I've listed might be different to yours. 

Let's get the knowledge out there!



8 comments:

  1. Just to let you know I had the same experience. Comments from HV and GP were "babies cry, so what" and "it's just colic, he'll grow out of it". I visited GP 5 times and spoke to HV 3-4 times. At 8 weeks I took him to hospital where they diagnosed CMPA. The change once we had the diagnosis and changed milk was instant.
    Now at 9 months he is the happiest little boy and thankfully the first 2 months are well behind us now.
    Symptoms were constant screaming, grunting all night, very little sleep (2-3 hours in total per 24 hours), explosive watery frothy nappies after every feed, constant feeding,pulling knees up and "climbing".

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    1. Hiya Jade!

      It's awful isn't it? And when you get the right diagnosis and they change into different babies it feels like such an amazing miracle!! Cutting milk out of my diet has been at a price, but I have to say worth it for all that!

      I thank God we got the diagnosis as early as we did (1 month). I hear of others who go for months and months being told a load of rubbish and wonder how/if I would have coped for that long.lad to hear you got the right diagnosis too! xx

      G

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  2. :'( Did not know so few practitioners are aware! Hope you all doing well, often think of you. We passed through WGC few days ago was so bizzarre! Xx

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    1. Hey Kat!

      We were back there the other day. It does feel weird. We doing OK but moving again, soon. Must catch up! xx

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  3. This sounds like my little one. The first few months with him were just hell. Was not much of a pleasure to have a small baby at all. He's now four and still doesn't have dairy, does have allergy to peanuts and we're only just reintroducing egg into his diet.

    It's a long road though and just last week I had a naff experience with the GP with my son's eczema. I despair so often and wish these conditions were taken more seriously.

    I also wish that we got to see paediatric GPs for our children in this country.

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    1. I can so relate to that 'not much pleasure to have a small baby at all'! I remember feeling so envious of all those other mothers who just seemed to sail through. I don't think I relaxed enough to enjoy 'Baby' properly, until she was nine months old.

      The idea of pediatric GPs is an interesting one. I wonder whether they'd be more open to allergies/know more about them.

      I think what I find disheartening is the lack of openness to explore the possibility that something might be an allergic reaction - it's like they've been told that there's really only this tiny percentage who are allergic and if they've filled their quota, then it's not you!

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  4. Our story is sadly similar. Battled with Health Visitor & GP to get diagnosis, fobbed off multiple times with comments like "but he looks fine" or "he's just a sicky baby" or "it can't be an allergy to milk as he doesn't have diarrhea" and "it's just a bit of baby eczema" despite the fact that he dropped 3 centiles, vomited & writhed around in agony after every feed, and was so plastered in eczema that his cot was covered in blood every morning (he wore scratch mitts 24 hrs a day, even in the bath). Finally got a GP to take me seriously and refer us to paed consultant. Diagnosed with cmp allergy, later discovered he's also severely allergic to wheat, eggs and nuts. Skin specialist was horrified at the state of his eczema and was amazed that he was able to eat or sleep given how much pain he was in. Told me that he should've been referred months ago. I cried. Ended up changing GP surgery as they continued to be totally useless eg refusing to prescribe sufficient hypoallergenic formula for more than a couple of days at a time, prescribing a different bread to the one requested by dietician and not bothering to check the ingredients (thankfully I did as it contained egg) and not bothering to offer the egg-free swine flu jab as they hadn't checked his notes again.

    To be fair to the medical profession, all the consultants, nurses and dieticians we've seen in secondary care have been great but it's the primary healthcare professionals that really need upskilling in this area. They need more training and a better understanding of allergies and intolerances (and coeliac disease) plus they need to know when to refer to specialists. They're called 'General' Practitioners for a reason - they're NOT specialists so they shouldn't be so reticent about referring patients to those who ARE.

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    1. Yet another horror story :( The NHS reminds me of 'the little curl who had a little curl right in the middle of her fore head...' when the NHS is good, it can be very, very good and when it is bad... it can be horrid!! Some health professionals are excellent. Others...

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