Tag Archives: reflux

Is there a link between infant PS and later abdominal trouble?

Most General Practitioners (GPs) will reject any link out of hand.  Some GPs have even been known to ask their patient (or client) what “PS” (pyloric stenosis) is.

We can be sure that every medical textbook and training includes at least a page or part of a lecture on PS, which is the most common reason for non-elective surgery on infants in their first months and years.  But who can blame a medical student for not remembering everything they are told and read over six or more packed years?

However, the almost universal denial of a link between PS and later abdominal trouble is more than a nuisance.  It may be “textbook” but it misleads and misinforms the parents of a PS baby and most will continue with this false assurance until they discover the truth – usually only after much frustration.  As for PS survivors, they are the immediate and personal subjects of the widespread ignorance and misinformation about the possible long-term gastric and other problems that can come with PS and/or its surgery.

113This kind of trouble does not seem to afflict the majority of PS survivors, and may only affect a small minority.  But considering PS affects between 2 and 5 in every 1,000 babies, that is still a lot of people!  I have on file hundreds of stories just from those who have told something of their story on Facebook’s several PS Group pages – and elsewhere!  There are several other social forum sites carrying the stories of worried or unhappy PSers.

The pattern is typically like this:

  • The “survivors” endure some years of increasingly nagging (though not mortal) discomfort, pain and frustration with real but unidentified gastric and/or other abdominal symptoms (tightness, pain, bloating, irritable bowels, dietary misbehaviour, vomiting, etc.
  • Their doctors seem loathe to acknowledge these symptoms, giving their patients medication or dietary advice.
  • There is outright rejection of PS possibly having long-term consequences – the high acidity of PS, damage to the gastric passage and even the lungs (from ingested vomit), post-surgical adhesions, and trauma after old-style infant surgery and hospitalization are just some of the hazards which should be considered.  All of these possible conditions have been documented and reported in medical literature.
  • It seems that often the “survivor” discovers the link between their malady and their PS past only when they stumble onto an online forum where they find they are not alone.

Sadly, because PS-related problems are low on the medical world’s radar for several reasons, there is virtually no interest in researching them.  Hence the medical juggernaut rolls on in rejection and ignorance.  However, there have been a few small studies and (from what I have found) just one very large study that have confirmed that infant PS is not always free of long-term consequences.

If the reader is interested to trawl through enough pages of stories on this blog and on the screens of the largest three of Facebook’s PS Groups, they will also find reports that several GI specialists have (usually after many, many consultations) admitted to a connection, agreed on tests, and arrived at better advice treatment.

In 2014 a pediatric surgeon friend and I published a small book, in which he explained what many still regard as the elusive cause of PS and I outlined my personal experience of this condition.

Pain01Lay reading of medical journals and even a basic understanding of how our gut and PS work tell us there certainly can be a link.  More specifically, the high acid that causes PS continues with the patient, raising the risk of related issues including reflux, irritable bowels, esophageal damage, and gastric ulcers and cancer.  Reduced gastric emptying could well be caused by damage to the vagus nerve or adhesions from the operation constricting the working of the stomach and gall bladder, whilst the throat / voice problems are likely caused by erosion / scarring of the esophagus caused by reflux, high acid, or lack of care with the breathing tube during surgery.

Of course anyone with any such symptoms would need a proper diagnosis but it’s not hard for even lay people to understand the links.  With countless numbers from my Facebook networks, I plead with the medical profession, parents, patients and the family and friends of PS survivors to recognise and help spread the awareness of this quite common condition and its possible ramifications.

And if what you the reader has learnt here “rings a bell” … I sincerely hope that you have been greatly encouraged to pursue your problem and get it sorted out.

Pyloric stenosis and reflux (GERD)

Parents of a pyloric stenosis (“PS”) baby often face one or both of two questions –

1                    Does this sick baby have PS or reflux ?

2                    My baby’s had surgery for PS but is still sicking up – is this still PS or is it reflux ?

This blogsite’s main post on telling the difference between PS and reflux (or GERD or GORD) was written 30 months ago and is one of the most often visited.  That’s two good reasons to look at the main facts again.

First, some necessary information about GERD.

GERD stands for gastro-esophageal reflux disease (the American spelling), and GORD is the English equivalent.  What is it ?

Reflux or GERD in babied ((c) Mayo Clinic)

Reflux (GERD) in babies – (c) Mayo Foundation

If the muscle ring at the lower end of the esophagus (the tube that takes our nourishment down from the throat to the stomach) is unusually relaxed, weakened, does not close when it should, or becomes herniated, the gastric (or stomach) contents are forced back up the esophagus.  But this fluid material will now have become acidified, and so it will burn and damage  the lining (the mucosa) of the esophagus.  What we feel as a result is usually described as heartburn, chest pain, regurgitation, and nausea.

Reflux can be minor or very, very unpleasant but in itself it doesn’t kill.

It is believed that in the “Western” world between 10 and 20% of people will suffer with GERD at some time or chronically.  Serious and continued GERD can cause other problems, ranging from coughs and esophagitis to ulcers, scarring and even cancer.

Almost everyone will sometimes experience passing reflux.  Depending on its seriousness, GERD can be managed with diet, antacids and other medications.  Some of GERD’s causes may require surgery.

Babies have an immature system, including their gastric tract, and for this reason most babies will “sick up” – some occasionally and some very much.  Anything that upsets a baby’s stomach is likely to affect its working, whether it’s mother’s lovely spicy dinner flavouring her breast milk, or abdominal surgery during which some strange tools and gloved fingers fiddled with its insides.

So it’s not hard to realize that almost all babies will continue to vomit and have reflux after abdominal surgery such as a pyloromyotomy.  This may happen just a few times, or during the days of post-operative recovery, or for some weeks or even months and years, or baby may (now) have a chronic problem.  Unless the baby’s immediate family are all troubled by GERD or have never known a sign of it, it may be hard to get a sense that a PS baby’s post-op GERD is either a family trait or was probably triggered by the surgery.

My reading and listening have shown me several things –

            1. Little substantial medical research has been done and published about this common problem.
            2. The very few small samples that have been reported have all found (1) that PS people have a higher rate of gastro-intestinal “conditions” – but (2) hasten to add that the number is not significant.  My logic and reading make me disagree!
            3. Pediatricians and peds ward workers will usually warn parents to expect some post-op vomiting and GERD.
            4. When GERD continues, most doctors dismiss it as resulting from the surgery.
            5. Those affected by PS, surgery and GERD should be aware of the fact that (like every part of our broken society) the medical world engages in what might be termed “power play”.  Doctors like their many kinds of authority, hate it being questioned, protect each other, work and talk together, etc.  They also dislike spending time that will affect their day and the patients they must see: issues (and thus people) will not always be adequately dealt with.

Now about pyloric stenosis…

First some major differences between GERD and PS.

          1. GERD in itself is not deadly but untreated PS usually is – and quite quickly so.
          2. Linked with this, GERD will slow down weight gain and growth but PS will usually reverse it.
          3. Although both result in vomiting, GERD is caused by the stomach’s entrance muscle ring and PS by the exit muscle.
          4. In GERD the muscle ring is not 100% effective but will usually develop; in PS the muscle ring is stimulated to over-develop, a process that can usually be stopped only by medication or surgery.
Pyloric stenosis in babies

Pyloric stenosis in babies

Many of our medical advisors (GPs and paediatricians) will not diagnose a baby with PS (or even consider this) until all other possibilities have been eliminated.  This is correct: we don’t rush to infant surgery unless it is necessary.  But this sound principle sometimes masks diagnostic ignorance or incompetence.  Countless hundreds of outraged parents have written up their traumatised stories on the internet to warn others that their baby could have died before their doctor might have diagnosed PS.  They usually tell us they went to another doctor, or (quite often, it seems) created a scene at the local hospital’s Emergency Dept.

Soon I want to revisit the different degrees of infant vomiting caused by the pylorus.

As stated above, true PS will usually kill.

The baby loses first weight and then condition.  Bowel motions and then urination will slow and stop.  The stomach and esophagus will be damaged by the acid and violence of its vomit – which may show traces of fresh or old blood.  The baby will not only be ravenously hungry and starve, but it will also visibly dehydrate, and (unseen to the eye) its blood chemistry (make-up) will become so messed up that it will move into sleepiness – this being the sleep of death.

If in any doubt, see your doctor or the hospital, and if still in doubt about the outcome, insist on doing a test feed, and having blood tests and imaging tests done (xray, ultrasound).

If your baby is not showing these terrible symptoms, before or after PS surgery, its problem is unlikely to be PS.

gerd-or-ihps-table1I recently came across the story of a 10 month old boy whose distressed mother suspected that an incomplete pyloromyotomy was responsible for his continued projectile vomiting and his being only half the weight normal for his age.  Was this a case of continuing PS and doctors denying an obviously incomplete pyloromyotomy?  Or was it severe GERD that was responsible?  A truly independent doctor was very much needed to decide.

Parents and patients will sometimes find such people-of-integrity and compassion hard to find.

The difference between GERD and Pyloric Stenosis

Four of my blogs during the past six weeks have dealt with the sadness and/or anger of far too many parents the world over because the diagnosis of their baby’s malady was by any standard less than respectful and thorough.

I have observed in several blogs that all the parents and medical professionals concerned with this issue could improve their consultation process in particular ways, possibly in many ways.

During the past week I heard a radio program about the number of parents who take their sick children to the local hospital’s Emergency Department.  Some went there with urgent and serious conditions but we were told that many went with minor ailments of infancy that could easily have been taken care of in other ways: by checking the web or a book at home, consulting a family member, or calling on their local pharmacist or the local health clinic.

What completely amazed me however, was the comment of the health professional and educator being interviewed that in Australia and most other developed countries most hospitals do not use an evidence-based diagnosis procedure!  That is: a list of the symptoms, questions, and tests that need to be worked through to arrive at as accurate and prompt a diagnosis as possible. And that most health workers do not have one either.

Every medical worker is like everyone of us: we all have strong and weak areas.  Not every family doctor is a whiz at diagnosis or sports medicine, not every surgeon is a good communicator, not every nurse has a good manner with children, and not every hospital CEO is a born negotiator.  We all need to recognise and remember that.

This is all the more reason to ask why every hospital “emergency room” (ER) must not have a formal set of diagnostic procedures!  My body and its working and defects is very, very complex, and thus diagnosing a problem can sometimes be very difficult.  If we could expect every ER to have somebody on duty at all times who is able to cover many cases and who is strong in diagnosis . . . “and pigs will fly!”  Surely every doctor and hospital must have a list of the symptoms, questions, and tests that need to be worked through to arrive at an accurate and prompt diagnosis.

Let me illustrate with a simple example.

Many parents who take their new baby to their doctor or ER because of constant vomiting tell us they were assured the problem is probably gastro-esophageal reflux disease (GERD) or reflux.  Their family history of pyloric stenosis (PS) or their list of symptoms pointing to this was summarily brushed off: “All babies sick up!  New mothers are anxious!”  Just read the recent posts or some of the web-based comments.

In recent blogs I have listed the symptoms of PS.  The following small table makes it easy for parents and all concerned to recognise the clear differences between PS and GERD –

I have seen many tables like this on the web, dealing with many different conditions and symptoms.  They help the general public, and surely such simple information (or fuller versions of them) would also greatly raise the standard of good medical diagnosis.

Recognising Pylorix isn’t usually rocket science

A very early photo

Having had my pyloric stenosis surgery at the very early age of 10 days is one of the very few things I know about that early chapter of my story.

My parents always batted away my questions, and being a shy and compliant child (my aggression is typically of the “passive” kind) the details of this vital episode of my life have sadly gone to the grave with my dear folks.  But I’m “a brooder” and I have been able to learn a lot about my infant surgery by reading, networking and joining the dots.

The symptoms of infant pyloric stenosis can appear at any time during the first six months (and very occasionally even later), but usually between 3 weeks and 3 months.  Sometimes the symptoms develop over several weeks, and sometimes very quickly.  So having PS surgery at just 10 days means that my case must have been very clear, if not urgent.

In recent blogs I have written about the frustration many parents express about their doctor when the signs of a major problem with their baby were summarily dismissed time after time.  Sometimes their problem was indeed a normal part of getting to know their new baby.  But there are far too many stories of babies suffer professional neglect until their condition was such that the parents were told, “Your baby would have died if you had delayed another day”.  I doubt this happened to me.

Pyloric stenosis is by far the most common condition in a baby that is (usually) dealt with surgically.  It affects 3 – 4 in every 1,000 babies and its symptoms are usually quite clear, whether they take a few days or weeks to become clear and critical.  Even better: you don’t need medical training to recognise and keep a list of these symptoms.  All your doctor has to do then is run a few double-checks, like xray or ultrasound imaging.

  • The first thing to look for is projectile vomiting.  During or up to half an hour after a feed, the stomach turns your baby into a fountain, as the milk is expelled with great force, typically 1 – 4 metres across the room.
  • The second sign is no loss of appetite.  PS babies do not feel sick after their vomiting but feel hungry immediately, and tell you by crying.
  • Weight loss is the third clear sign, so keep a close eye on your baby’s growth.  Babies who cannot process their food cannot maintain their weight, let alone grow.
  • Watch for signs of dehydration.  A clear case of PS means dry nappies (diapers), a dry mouth, crying without tears, and the depression of the soft spot of the skull.  Dehydration also makes the baby less active and more sleepy.
  • With dehydration, the bowel movements also stop or become infrequent and minimal.  There may be mucous and a green colour in any stools.
  • Keep an eye on your baby’s abdomen, especially during and after feeding.  Rhythmic movements from left to right show the stomach muscles are working (in vain) to move the food through the pylorus (“gate” or outlet) to the intestines.
  • You may also be able to feel the swollen pyloric muscle, which in PS is about the size and shape of an olive.  To try this, relax your baby by having it on your lap, keeping it warm and giving it sugar to suck; raise the legs to further relax the bared belly; with warm fingers press gently and feel over the stomach, usually in the middle to left and north of the umbilicus.  But usually it will take a skilled person to feel the swollen pylorus.
  • Having a compelling checklist of all or many of these symptoms will make it far less likely that a doctor or paediatrician will not take your anxiety seriously.  If the information you gather is not very convincing, it should reassure you that the problem is not (yet) PS.  If it is unclear and your baby has not shown wasting, it would be wise to consider trying alternatives such as medical treatment for reflux or PS rather than rushing to the operating room.
  • If the signs are clear for infant pyloric stenosis, a pediatrician must make a formal diagnosis.  You can demand this if your baby shows any of the clearest signs and symptoms of pyloric stenosis.  The doctor who can feel the “pyloric olive” as part of a physical examination will probably still use a variety of tests including ultrasound, X-rays and blood tests.  Ultrasound enables the pylorus to be measured to assess whether it is indeed swollen.  An x-ray will show conclusively whether food is indeed blocked from passing through the exit muscle.  Blood tests are needed to assess the blood chemistry work that is vital for a tiny PS baby to recover from dehydration and starvation, and to survive medical treatment and/or surgery.

Pyloric stenosis like many other faults of the infant abdomen is fatal unless treated.  PS is probably the simplest of these faults to remedy, and it can be treated with medication far more often than the present Western medical world determines!  In my day (1945) PS surgery was still seriously life threatening and deeply traumatic for all concerned.  It is still hugely distressing for all parents, but usually only in passing.

Almost all of us who have had pyloric stenosis and infant surgery are also surviving it.  But this chapter can cause trauma for the infant in later life, which may be why some of you are reading these blogs – and it’s the main reason I’m creating them.

Shoddy diagnosis = parents in pain

Isn’t it just so satisfying when all the pieces of a puzzle come together promptly as well as perfectly?

Recently I read about a woman who was severely worried about her grandson. It was only weeks after his birth that his grandmother decided to get him to her doctor. Her GP could see immediately that the little man was having problems with his food and that he was starting to become dehydrated: he knew instantly what he was seeing and suggested that the baby was suffering with Pyloric Stenosis. The grandmother looked worried until the doctor lifted his shirt and showed her the scar he’d had across his stomach almost since his birth. Grandma urged her daughter to take the baby to her own doctor, suggesting to him what she thought the condition was. The baby was taken in immediately, operated on and is doing well now.

Wave-like motion across the abdomen after feeding and before vomiting is typical of PS

This story would be quite common. After all, pyloric stenosis occurs in one in every 250-300 babies, so there are many thousands of medical workers who like myself would quickly recognise the condition.

Besides this, pyloric stenosis is the most common reason for infant surgery (apart from elective and unnecessary circumcisions) and apart from tonsillectomies, the most common surgery on children under 5. Every pediatrician, family doctor and hospital emergency department in the world will have seen many cases. Almost always, many of the symptoms cannot be ignored: over several days (or very sometimes, weeks) pyloric stenosis gets to a life-threatening stage that demands medical treatment.

Even more significantly, every medical textbook includes the easily understood and quite obvious tell-tale signs that everyone could easily recognise: projectile vomiting, the reduction or complete cessation of bowel and bladder movements, loss of weight, condition, and finally alertness, and often visible muscular movements across the abdomen and an olive-sized and -shaped mass that can be felt over the stomach.
Yet most people have never heard of this common malady. Worse still, many doctors don’t consider it until they’ve ruled out other problems. And even worse than that, there are hundreds of complaints on the web from parents who have been upset or angered by the way their distress and their baby’s trouble were brushed off with (usually) patronising talk of “all babies puke” and “over-anxious parents”.

Here is one mother’s story:

When my youngest was born he was really sick all the time and the doctor kept telling me he had reflux, but I just knew there was something more to it, as the Gaviscon and Infacol didn’t do a thing. I had him at the doctor 3 times in 2 weeks and he just said the same thing. The final straw came when he was only 3 weeks old and I was feeding him and he took half an ounce and brought up about 4, so i took him to the hospital and the little soul had pyloric stenosis and needed to have an operation. If I had kept listening to the doctor he could have ended up seriously malnourished, but because I trusted myself he was in and out of hospital in less than a week.
I say, don’t ever doubt yourself: you know best!

A month ago an Australian blogger posted the horrendous process a friend of hers endured before the severity of her baby’s condition was taken seriously. Anna’s full account is worth reading; it is both infuriating and heart-rending.

Let me highlight the main points here:

  • Anna’s friends had two normal healthy children before their son developed what they first assumed was reflux at two months.
  • As the “reflux” became worse, the mother took her son to a doctor who treated him for a cold.
  • A week later her son had clearly lost condition so she decided to see another doctor, who diagnosed bronchiolitis again, as well as mild reflux. The mother protested that her baby was projectile vomiting after every feed, that he had stopped gaining weight, and that a cousin had had pyloric stenosis. The doctor said little but his manner told the mother he thought she was over-reacting.
  • Not satisfied, the woman then took her son to the local hospital, which also told her the problem was reflux.The infant was now losing weight, he’d become more irritable, his bowel movements were black and his urine output had fallen. He was seen by a third doctor who agreed that his condition was of serious concern. But he also diagnosed the problem as reflux and prescribed a week’s medication.Three days later, the mother steeled herself to see the hospital doctor again, who refused her demand to test the baby for pyloric stenosis, nor did he give any medication; he did make an appointment with a paediatrician for two days later.
  • The following morning, the baby was listless and crying in pain. With the husband’s and grandparents’ support, the baby was taken back to the hospital. The infant was admitted and immediately treated for dehydration; an ultrasound showed his pylorus was enlarged and closed.
  • The local hospital could not do the surgery but then the city children’s hospital refused to recognise the diagnosis; the tests were repeated but again rejected. The children’s hospital then agreed to receive the baby, now a 10 week old whose only intake was coming from an IV drip, but he would have to go through the entire admission and testing process again.
  • Finally transferred to the children’s hospital, the couple saw a surgeon at 3 am who immediately agreed with the pyloric stenosis diagnosis and arranged urgent surgery. He was appalled at the way the family has been dealt with, and commented that most infants with pyloric stenosis do not survive for two weeks and that most cases are diagnosed within a week.

In my next post I want to set out and explore some of the good and bad reasons why so many personal stories about pyloric stenosis babies are not happy ones.

[I am grateful to Ly’ren, Maxine and Anna, the people whose stories I have included here; the web addresses of the blogs referred to are available on request.]