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 It's really not rocket science - yet STILL top consultants cling to the outdated notion that reflux is a disease in its own right.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.

ePetition to improve frontline care for those suffering from reflux and allergies

Readers of this Blog old and new will know only too well how poor the diagnosis and care of children with food allergy often is. We lag well behind other Western countries in our diagnosis and care of those suffering from allergies, and this is particularly shocking when you learn that the UK has the highest incidence of allergy in the world. Yes - in the WORLD.

Our rates of allergy - reported AND diagnosed/confirmed are soaring, particularly the rate of non IgE allergy. In babies and young children this often manifests as allergic gut with symptoms such as reflux and or motility problems. In the nearly seventeen years since I have been a parent of a child with such health problems there has been frighteningly little progress. 

(I have written about my reasons for setting this Blog up here. )

And what is MORE alarming is that when under-informed front line health professional blame the parents - or more often the mother. It is three and a half years since NICE published their extensive guidelines for Diagnosing and Treating Babies and Children with Allergy - and they clearly set out likely non IgE allergy symptoms - and contrast these with intolerances which are very different. Yet STILL our NHS is stuck in the Dark Ages and resources are misdirected.

 If you want to clue yourself up about the differences read this.

My children have multiple consultants when one Paediatric Allergist would most likely replace almost all of them. But the system prefers to crisis mange symptoms depending on their location in the body, rather than the underlying cause. Small wonder there is little funding left! 

Too many times I hear of families who are wrongly informed by so called professionals that their child cannot have a food allergy because skin prick tests are negative - this is incorrect, and yet it persists. 

Last Autumn I attended the All Party Group for Allergy at Westminster and heard more depressing statistics and how very far we have to go. But to my mind THE most important thing is that front line health professionals - Health Visitors, GPs etc have at least READ what is NOT new information. Is that really too much to ask??

Please, please sign this petition to help, too many mothers are blamed for symptoms their babies suffer because those they seek to ask for help fail them.

Alpro Soya "Nut-gate"

The Interwebs are currently buzzing with the news that Alpro Soya are now printing warnings of potential hazelnut and almond contamination in their soya products as they are altering sites for production of their dairy free alternative milks. Understandably, there is an outcry as many who avoid dairy products choose soya as their dairy substitute and are also allergic to nuts. Alpro responded to concerns on the Allergy UK website. Certainly their measures sound as stringent as anything any parent of an allergic child can achieve by any other means but there are always those who will be affected. This is a production choice Alpro have made and they may indeed lose customers because of it. However, I sincerely believe the bigger issue is being ignored here.

In an increasingly allergic world there are as many combinations of allergies in individuals as there are allergic people. And any reliance on only one substitute can precipitate issues including new allergic responses. The reliance of the dairy free industry on soya is not a long term option, far too many people have IgE and non IgE responses to Soya - and it is one of the "Big Four" to avoid  according to many health professionals. Certainly Gt Ormond Street Hospital advise going "MEWS free" as an important first step when embarking on exclusion diets. (MEWS = Milk, egg, wheat and soy)

Undoubtedly Allergic Disease is almost epidemic at present with the UK topping the world table of incidence of allergic disease. More about that here, information learned when I attended the All Party Group for Allergy at Westminster this Autumn. We should not be complacent in our careful replacement of major allergens from our own or (especially not) from our children's diets. Fortification of alternatives (e.g. calcium and Vitamin D in milk alternatives) is essential, as is careful pricing of worthwhile products, support for new producers and accurate information for consumers. The fact that yet another producer appears to have caved to the litigation-prevention soft option is not good news. It seems a massive fob-off for those shopping for exclusion diets - avoiding the issue of careful checking and stringent manufacturing processes. Or does it?

MEWS free bread on prescription

Some GP practices will prescribe gluten free products for those on medical exclusion diets other than exclusively for coeliac disease patients. Because EGID is a similar process to coeliac disease (only triggered by many foods and environmental allergens rather than just gluten) and can be diagnosed conclusively by biopsy in most our PCT have prescribed gluten free products for the twins for a couple of years.

Recently however we have had to reduce our egg intake, AND NHS Suffolk have dramatically reduced their prescribable products list and no longer offer the full Coeliac Society list they used to support. This left us high and dry since many of their currently endorsed products contain milk and or soya. None of the pastas now available are suitable, all contain soya flour for example.

We had to do the research ourselves and discovered Juvela Harvest White was the best solution. It's an excellent MEWS free flour mix which I prefer to make in to rolls, the loaves are ok when fresh but not great afterwards. Rolls need freezing if not being eaten within 24 hours and need a little freshening up before eating after defrosting. This does mean they don't work for school packed lunches unless fresh, but I have now got it down to a fine art and make half a box every other day. Labour intensive... but it works and both twins will eat them!

Raising Awareness for Eosinophilic Awareness Week

Healthy Eating - What it means for us

 The third week in May is Eosinophilic Awareness Week. Help raise awareness of food allergies, and their impact on young lives by considering sharing this child-friendly information with your child's school:-

"There are different types of food allergies. We have Eosinophilic Disease, when the body gets confused and thinks some foods are like germs and need attacking. The problem is this attack can end up hurting your body too! Eating those foods make your throat, tummy or bowel red and sore and stops them working properly. If you are not careful then things we all take for granted like eating, swallowing and digesting food don’t happen properly. Going to the toilet can be painful, take a long time and be really difficult.

Like any other food allergy you must stop eating the food your body is reacting to. Some people react in a quick, dangerous way to foods. This can be life threatening. Others react more slowly but the long term effect can be very serious. All our bodies like to be cared for, letting them get red, sore and swollen for long periods of time can damage them. Our bodies work best when they are properly cared for. We all try and look after our teeth by not eating too many sweets! If you have a food allergy you look after your body by avoiding those foods your body reacts to. Sometimes that means you cannot eat foods which have important things in them for growing. That can mean you need to find those important things in other foods, or in a special formula drink, and take medicines to keep healthy.

We all know someone who cannot eat nuts, or eggs, maybe both. Imagine not being able to eat anything made from milk, AND nothing made from wheat, gluten - which includes oats - OR soya. It’s hard. Getting enough energy is really important - we use a lot of it in school! So sometimes food you might think is less healthy is just right for us! Healthy Eating is really important. It is about looking after your body. But most of all it is about eating in a way to take care of your own body in the best way possible for you."