Scarce and conflicting research on pyloric stenosis

Trigger 1
Recently I had my 2-yearly “full medical” exam (and passed it well), but something my doctor said struck me.  When I asked him why he wasn’t running a particular test as in the past, he said that recent reports about that test’s value were so conflicting that he thought it better to rely on other indicators.  Fair enough.

Trigger 2
Mothers-to-be in Melbourne (Australia) are going to be invited to participate in a promising medical trial, our morning radio told us today.  There are indications that immunizing newly-borns with BCG vaccine against tuberculosis may reduce the fast growing occurrence of childhood allergies (very common in Australia), and this trial hopes to confirm this finding.  The question was asked, if early indications have been so promising and the vaccine is widely used in many countries, why not make the trial much larger?  The answer: funding is only available for a few thousand participating.

Trigger 3
I recently interacted with a PS survivor who challenged me about my belief that PS occurred more often in premature than full-term babies.  I consulted several reports in my collection and admitted she was correct.  Since then, almost everything I have read about this issue confirms my original understanding.

This blog exists because as one who had surgery at 10 days old for pyloric stenosis (“PS”), I know the value of sharing much more information about this condition: how it behaves, how to treat it, and the long-term effects of both the condition and its surgical remedy.  For most PS survivors, their story seems to be little more than a blip, or an unusual scar on their body.  But for some, their PS page has been a mystery, even a closed secret, the scar a significant embarrassment in their growing up, and the surgery has left them with physical and emotional wash-up they find hard to discuss and understand.

In this post I want to link the above three “triggers” with what we know and don’t know about PS.

Sparse research

It is frustrating that although PS has been recognized for some 300 years and surgically treated for a century, it is still rather imperfectly understood.

This is because there are far more medical conditions and challenges than research funds.

Question-marks1Research funds and projects will inevitably concentrate on the issues that affect the lives and income of the great majority of the people in the developed world.  Heart disease today is much better understood, reduced and treated and early death related to it far less likely because of the present armoury of drugs, reduction strategies and surgical technology.  The same can be said about cancer, diabetes, blood pressure, kidney disease, bone and skeletal degeneration, pregnancy and childbirth, and even the brain.  And despite the mentally ill being the human family’s poor cousins, psychiatry has seen similar advances in helping those with mental illnesses to stay in society and even work.  Anesthesia and pain control have also seen remarkable progress.  I could continue…

It seems to me that the less common and the most inevitable and age-related conditions have missed out most on progress: congenital conditions, many of the rarer cancers (e.g. in the pancreas), and age-related illnesses such as dementia, multiple sclerosis and similar degenerative diseases.

Sadly, the malformations and conditions of early life are also in that category.  PS is the most common condition of infancy to be treated with surgery, and there are many more, most of them more severe.  But very little progress has been made in learning how these can be avoided or the risk of their development reduced.

The reason is ultimately money.  The cost of modern medicine is increasing far beyond our income and the other costs of living, including the costs of clean water and usually dirty energy.  Few governments dare to devote more of their budget to medical research. Corporate charity is usually extended to those who can unlock new income.

Conflicting data

Sadly, not only are funds more medical research very scarce, but if PS-related research is any indication, many of the results of the little research that is done in more off-beat areas shed little useful light.  Here are some of the areas of clear and “statistically proved” disagreement that I have found during many years of reading online research reports on matters related to PS –

  • Q mark1Are breastfed or bottle-fed babies at greater risk of having PS?
  • Are premature or term babies more likely to develop PS?
  • How many Caucasian (“white”) babies in 1,000 are likely to have PS?
  • Is there a link between parent income and work and the incidence of PS?
  • What percentage of PS affected babies are first-born?
  • What percentage of PS babies have an affected relative?
  • Is PS almost impossible to recognise and diagnose promptly and early?
  • Which is the less costly way of treating PS, surgery or medical therapy?
  • Is medical treatment of PS almost impossible for willing parents?
  • How many babies have gastric problems like GERD and IBS after a pyloromyotomy?
  • Does a pyloromyotomy have any long-term effects?

There are numbers of files in my collection reporting on projects and “evidence” that claim to answer each of these questions in opposite and sometimes several ways. Several observations are in order.

  1. Many of the discrepancies reflected by this list are probably the result of small sampling and/or not mentioned variables resulting in poorly based statistics.
  2. The issues chosen for many of the research projects around PS are mainly statistical and often they are hardly significant, as this list bears out.
  3. Only a few of the areas represented here can help in treating PS.
  4. Very little work seems to be done on the causes and reduction of this and other congenital and early conditions, and I fear this is because such research is costly in time and funds and beyond a doctoral student, an individual scientist or most hospital teams.  But they are expected to engage in research, so “medical research” they do.
  5. Very, very little has been done to identify and quantify the possible long-term effects of infant surgery and conditions like infant PS.

Q mark2What this post shows me might incline me and the reader to feel despair.

However, it gives me hope that when I think back over my lifetime of 65+ years I certainly recognize some areas in which infant surgery has made significant progress during my lifetime. Mortality is way down, general anesthesia is almost universal, and scarring is much reduced.

May this progress continue and grow into those many areas of relative confusion and complete neglect which I have pointed out.

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3 thoughts on “Scarce and conflicting research on pyloric stenosis

  1. wendy williams

    It is AMAZING how little, if any, follow-up was done on PS babies who were treated surgically. Shocking, really. I appreciate your point about the lack of available research dollars, especially for a seemingly seamless operation. AMAZING amount of questions still unclear after your years of uncovering research. When is medicine going to discover the root cause of pyloric stenosis, after all? Dr. Ian Rogers claims it to be the result of an excess of acid production, thus hyperstressing the pylorus, but his theories have yet to be proven, though he is in the process of supporting a promising study. I can’t wait to see the findings.Thank you for your devotion to this subject. Maybe we’ll see a change in our lifetime?

    Reply
  2. robeliken

    I have been scouring the Internet for a blog like this for YEARS! I am a female, had surgery for PS at about 4 wks old in 1974. Have had gut pain my whole life; recently had my gallbladder out, and diagnosed with early symptoms of Crohns (via colonoscopy). My problem area seems to be the ileo-cecal valve. When I asked my gastro doc if it could possibly be related to PS, he scoffed. But to me, it seems somewhat likely that a lifetime of problems with various sphincters would be related. It’s also in my family: hiatal hernia in my grandfather, intussusception in my aunt, and PS in my niece. We have some bad gut genes! I have experimented with various foods over time, and have finally found that a mostly paleo diet, high in fat and low in foods with FODMAPs seems to placate my gut. Keep up the good work! I’m fighting like crazy to not grow old being debilitated by Crohns and other gut problems.

    Reply
  3. Fred Vanderbom Post author

    So good you found this site! If you have browsed through my posts you’ll have read that your story is far from unusual after PS: amongst other stories about GI complaints there are several on the web from people who lost their gall bladder only to be told their problem was caused instead by adhesions from their infant surgery. There are also many accounts of suspected links with other GI and other genetic-related conditions including Crohns. Patient questions about links are commonly dismissed by doctors but as I’ve reported, although the research and stats are sparse the little work has been done confirms some relationships – little understood at this stage.
    It’s good that you’ve worked out some remedies that suit your issues; I trust these keep your internals in good working order. Keep well!
    And I’ll certainly keep on with my work of passing on what is available on the web from an interesting range of sources.

    Reply

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