Tuesday, 25 November 2014

No more Mr NICE guy.

I'm actually fuming. Really spitting angry. Because of THIS.


I joke that I've been "riding the reflux roller coaster" for many, many years. But actually, it's no joke at all. Not even a tiny bit amusing. Because when you can be accused of something as utterly ridiculous as not feeding your baby appropriately/sufficiently because an arrogant health professional has never heard of reflux occurring in children without considerable disabilities after the age of twelve months you begin to lose your cool. And that was after many years of (relative) restraint, anxiety, despair, sleepless nights, screaming babies and nearly losing the plot all together.

Most babies DO outgrow their reflux. It isn't always a long-term debilitating problem. Neither is it a "disease". It is a symptom - usually of an immature sphincter, perhaps due to a developmental disorder and is often present in those with other underlying health conditions, but increasingly it is due to the gut responding inappropriately to food proteins (most commonly cow's milk) causing inflammation.

The gut is basically a hosepipe. Squeeze one section (inflammation) and the flow changes along the pipe. Inflammation anywhere will, can and DOES have an impact anywhere along it's length. So kids with constipation will commonly have reflux and people with a slow emptying stomach will have reflux due to backwards pressure too. It's really not rocket science - yet STILL top consultants cling to the outdated notion that reflux is a disease in its own right.

And babies with bowel inflammation will most likely have significant acid reflux. 

WHY?

Because they are on a liquid diet, because they spend a long time lying down and because their gut is immature  (the sphincter muscle sealing the stomach may not be quite tight enough) meaning they regurgitate more and also swallow more air, which needs to come up. (How many reflux mums will tell you that the entire feed will come back until the wind, trapped at the bottom *finally* comes up? probably almost all.)  Babies are also at higher risk of gut allergies too - at least in the short term due to a permeable gut which is designed to allow maternal antibodies through and offer extra immunity. (Which is why the WHO recommend delaying weaning until 6 months of age.)

There is increasing evidence that gut bacteria play a role in the infant gut, immunity and gastrointestinal disorders. Babies have a suppressed immune system at birth which gives a narrow window for the colonisation of their gut with healthy, protective bacteria. But in the West too many babies are given antibiotics early, born by caesarean section, or are formula fed and all these factors do have play a contributory role.

We also have this ridiculous notion in the West that babies should be allowed to cry. Babies cry to communicate with their mothers - you won't come across babies sleeping in separate rooms, "crying it out" or suffering from "colic" in the indigenous populations of the Third World. And this bizarre acceptance of infant distress is a hang-up from bygone times - yet STILL mothers have to try and explain to their (usually male) doctors that something is not right, that their baby is suffering - struggling to have some recognition of their (very valid) opinion.

So this paragraph made me particularly furious:-
"A lot of this is about the relationship between the baby and the mother and the mother's reaction to anything unpleasant or abnormal happening to the baby. "This guideline will empower GPs to reassure mothers there is nothing is wrong and they will get better on their own."
We should not have mothers sent away being told a persistently unhappy child is acceptable, a figment of our imaginations or in any way appropriate to ignore. 

I've been fighting, campaigning and persistently spreading the word about reflux for 17 years now. We all suffer here - possibly partially due to a connective disorder, certainly due to gut inflammation - but I spent months of Hell with ALL four of my children trying to obtain appropriate support. Even when lack of answers led to the finger being pointed at ME I refused to stay quiet, because I have reflux. It hurts! My Dad has suffered all his life - nearly died of aspiration pneumonia when younger, we have a family history as long as your arm, and whilst I would have LOVED those years of sleepless nights to have been a figment of my imagination, my husband would testify to the contrary.

So WHY, after years of progress are NICE seeking to turn the clock back?


https://www.flickr.com/photos/dad/

I do think we have lost our way a bit though. GPs began to play "catch up" and realise that infant Gaviscon only helps a tiny percentage of babies with reflux. It is a thickener too, creating a "raft" over the stomach contents and whilst this can be useful in some babies, it slows down gut motility and often causes constipation - which makes reflux worse! Even when this is less obvious it can slow gastric emptying sufficiently to cause problems.

(Some!) Doctors also began to realise that early weaning is probably not a good idea. Babies with reflux may sometimes be low in weight and solids fill them up but are less calorie dense. They slow down the gut too as their take longer to digest being another risk factor for constipation and making reflux worse! most worryingly the infant gut is permeable for the first six months and foreign food proteins can often get through and cause a local allergic response.

NICE Guidelines for diagnosing and treating food allergy  (IgE and non IgE responses) was published in Feb 2011 and whilst there is still a VERY long way to go more and more doctors are recognising that food proteins are causing the (very real) conditions such as FPIES, Proctocolitis, IBD and Eosinophilic Disease. Top paediatric allergists like Adam Fox have explained how food proteins such as Cows' Milk can and do cause problems and the message was very, very slowly starting to get through...... So stronger medications were prescribed - acid blockers like Ranitidine and Proton Pump Inhibitors like Omeprazole which definitely help hugely in appropriate cases. And the pharmaceutical industry responded in full, omeprazole is now one of the top prescription drugs in the UK, across all age groups!

And now, it seems there is concern that too many infants - and children, are taking these drugs. 

Absolutely. 

I would not disagree with that at ALL. But apart from the tiny minority that maybe are over-prescribing, I assume doctors would correctly refer cases on to professionals best able to judge whether such drugs are necessary?

Surely the bigger issue here, is WHY so many infants and children are NEEDING these medications?
Even our consultant in London has said there is an "epidemic" of such cases.

DOES THAT NOT BOTHER ANYONE?

Apparently not, it's easier to blame mothers, after all what do we know about our own children?

But most of all, I'm furious that this slipped under the radar - the article is from AUGUST, when most mothers are in the middle of the summer holidays busy with families or away. The directive is here and the draft guidance here.I hope to goodness someone actually addresses the real issues here:-
  1. Infant reflux with additional food related concerns is on the rise, and reaching almost epidemic proportions.
  2. IgE food allergies are also on the rise. Approximately 30% of children in all primary school classes will have an allergy.
  3. Gut allergies (non IgE) allergies are under recorded and poorly understood. Recent research and progress is actually now being diluted to fit in with National opinion.
  4. Somehow, the way live, the way we produce and process our food is contributing to this exponential rise in both food allergies and gut inflammation which cause reflux and bowl disorders in our young people.
  5. Less than 1% of medical research funding in the UK goes on gastrointestinal topics, NONE on paediatric gastroenterology. Isn't it about time we recognised not only the importance of the gut, but it's role in our overall health?
  6. The way we view mothers, babies and families has to change. Because slapping down mothers who are worried about their babies is certainly not the way forward. Scapegoating them will NOT address the fundamental concerns in the West about our gastrointestinal health, reflux is not going to go away, and neither are bowel disorders relating to food allergy.

Have your say - sign the epetition to change outcomes for mothers and their babies with reflux.


15 comments:

  1. It's awful when 'professionals' make sweeping statements in the media that totally don't take into account the people that they affect.

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  2. Signed. My eldest had reflux, as did her Dad, he actually had surgery in his late twenties for his weak stomach sphincter. Luckily my daughter out grew hers, but it was thoroughly unpleasant for her, and for me as a first time Mum who was watching her baby suffer and didnt know how to help.

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    1. Sorry to hear your husband needed fundoplication surgery. My youngest son had a fundo aged 2 . Wonderful that your daughter outgrew hers. x

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  3. What a worry this is. I have a friend who's little girl has terrible problems. It's such a worry for them.

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  4. I'm commenting on this slowly, interspersed with trying hard to work out why my ten week old is crying - I do wish they could communicate with more clarity! ;)

    In all seriousness though, I'm so fed up with people who don't know agar they are talking about sticking their nose in. In education it is particularly bad.

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  5. Sweeping statements are so damaging, all children are individuals! I was told when my son was 2 he wouldn't attend mainstream education - 16 years on he has 9 GCSES and is on track to get 3 A levels with an A * in Art.

    I don't know the ins and outs of this condition but it must be so worrying when your child has it and no one is listening to you.

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  6. I have friends with babies who have reflux and it's heartbreaking. I hope that things change soon and more research is dedicated to this area.

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  7. Well done on this post. I thought our days of reflux were over when my son started a gluten/dairy free diet (thank the gods for Neocate) but now it seems very likely that despite that he is still suffering from Eosinophilic Oesophagitis. Although he is the severe end of the spectrum many of my fiends were told to just put up with relux as their children were gaining weight. xx

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  8. Things like this really annoy me! Two of my kids have dairy intolerance and I've had nothing but problems with dr's saying they are having too much milk and it's expensive (I only give them formula until 1 anyway!) I was gutted when my new baby was diagnosed in hospital as I knew I would have the problems again.

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  9. My friends son has terrible reflux and has been hospitalised several times. Doctors have got to start listening to parents who know their children's needs better than any text book.

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  10. Well I learnt a few things from reading this post, having no babies it isn't something I know a lot about, but I do always believe the mother knows better x

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  11. I am so thankful that none of my children had reflux but I know several friends whose children suffered

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  12. Makes me so cross. My youngest had silent reflux and it was a fight to get anything prescribed

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  13. why do we have to fight :( professionals should be there to help

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  14. I went to sign the petition but it said I'd already signed it so I'm going to share it and try to get more signatures xx

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Many thanks for taking the time to comment!

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