Can pyloric stenosis be a mild case?

How long is a piece of string?  The variety of ways infant pyloric stenosis (“PS”) can raise its horrible head is like answering that hoary question.

Almost two years ago I posted an attempt to answer this question,  It is not only a post still well worth reading if you are asking yourself this question.  The post had several responses which underline how frustrating and kaleidoscopic it is to answer several of the questions about PS.  Let me run through the main parts to my answer again here.

Pyloric Stenosis or pylorospasm?

Whether there is a significant difference between Pyloric Stenosis and Pylorospasm has been argued at least since the early years of the 20th century and it is still debated in medical circles.  Those favouring the distinction describe Pylorospasm as a spasming of the pylorus triggered by the nerves and resulting in the delayed emptying of the stomach – but nothing much more .  It is agreed that true PS involves the thickening and hardening of the muscle band of the pyloric ring, and when advanced enough this would not let any food pass into the duodenum, usually with fatal results.

However, others have preferred to see Pylorospasm as the beginning or a milder form of PS.  There is a difference, but it may only be clear from an ultrasound study, as this article explains and illustrates.  Another useful article may be read (although only in summary) here.

From my simple and probably simplistic description it should be clear that Pylorospasm is not serious enough to warrant surgical and perhaps not even medical intervention, and that a full PS will be fatal unless there is some form of intervention.

Baby sick2 (Medium)To add to the confusion, PS is often termed “Pylorospasm”.  I well remember that in my native Netherlands the condition I had was called “pyloruspasmus” even though it was clearly a full-grade PS!  I find that the same confusing interchangeability continues in at least several different languages today.

The bottom line is: some misbehaviour of the pylorus is mild enough to not warrant surgery.  Not all projectile vomiting is deadly, so doctors will sometimes await further developments.  This is not to be confused with the fact that many doctors are accused of belittling parents, not taking time for careful diagnostic questions and tests, and brushing off parents with talk of reflux – all this when the baby has lost significant weight and condition, and even when the parents mention the family’s history of PS.

Many cases of PS do not go to the operating room

Google “I had” together with “pyloric stenosis” and you will find articles, forum comments and posts that support the above statement.

There are many mentions of babies with what was clearly PS and whose condition was responsibly judged not to be severe enough to justify surgery.  But these people in later life continued to battle with PS-like symptoms for many years – or lifelong.  Some eventually sought surgery (usually more major than an infant pyloromyotomy) and some did as best they could by managing their food intake and distressing symptoms.

Pyloric stenosis can continue to “grumble” whether or not there has been surgery

As I have stated many times, many doctors promise parents that a safe, simple and quick operation will solve all their baby’s PS problems and that there are most unlikely to be any after-effects.

Surgery can be very successful in treating PS but it can also lead to short-term or lifelong symptoms which seem to be similar to some extent to mild PS: reflux and IBS, sensitivity to gagging and vomiting, overweight or chronic under-weight, etc.

Mild PS which is not dealt with by surgery is sometimes not treated at all or is treated with medication such as Atropine sulphate or Ranitidine.  Either of these two courses may also lead to lifelong and troublesome gastric misbehaviour.

It seems beyond the ability of medical people to know whether a particular set of borderline or mixed symptoms should be diagnosed as PS, mild PS, pylorospasm, or something else.  It also seems to be impossible to predict the future course of any case of PS, whichever way it has been treated or not treated.

A thorough and substantial research project or two would be so valuable to obtain a clearer picture of the consequences of various levels and treatments of this rather common condition in babies.

Medication can treat many pyloric stenosis cases successfully

In most “Western” countries, the medical treatment of PS with Atropine sulphate or Ranitidine has usually been given no or scant consideration.

These two drugs relax muscles and allow the pylorus to relax, reducing its swelling and allowing it to open and shut without surgical intervention, but because of their effect on all muscles they must be introduced over several days and under careful medical supervision.  This course of treatment has been used for many years by pediatric specialists in many countries, and a recent Japanese project found its use succeeded in avoiding surgery in almost every case in the trial.

Parents who could or should consider medical treatment for their baby must 1) know the symptoms of PS well, 2) have gathered strong evidence of their baby’s condition and perhaps have had previous experience with this malady, 3) have a baby who is not close to death, and 4) are willing to learn how to use the medication.  They may also need a supportive person to stand by their side as they may need to insist on being heard and helped by their doctor.  It must be realised that the safe use of medication requires early diagnosis, a baby who is not frail or newborn, and a baby whose condition allows the several days necessary for the drug to take effect.

Interested parents should use the “Categories” search box to the right of this page to find and read posts like this one on “the hushed up alternative to PS surgery.

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7 thoughts on “Can pyloric stenosis be a mild case?

  1. Ian

    An interesting two author small book has been recently published by this blogsite’s author Fred Vanderbom and Retired Surgeon and Professor Dr Ian Rogers. Its title is “Consequences and Cause of Pyloric Stenosis of Infancy”, and it is available from the More Booksshop – http://www.morebooks.com

    Ian Rogers

    Reply
  2. robinpbotley

    I am a recovering survivor from triple infant surgery surgery of hare-lip and cleft palate from 1946 onwards and would very much like to hear from other survivors from that time. My journey with trauma recovery continues and I bless the sensitivity this has given me, but need the support of others to share the burden that lingers within the body unconsciously ‘seething’.

    Reply
    1. Fred Vanderbom Post author

      A belated but sincere thank you, Robin, for this Comment and your request. I do hope you get some helpful responses.
      You will likely be aware of the material I have mentioned (often with links) in my posts (use the Categories and Tag Searches), and of the links in the right-hand column of my blogsite. These not only take you into several available avenues of therapy, but these sites also include comments from others who have suffered in an ongoing way after surgery in infancy.
      I fully agree that our individual journeys with trauma recovery have deepened our awareness of and sensitivity to the pain of many others in all kinds of circumstances.
      This has been of great personal value to me. It’s also a fact that I continually regret that so few of your and my age group seem to “connect” about their journey; perhaps we’re more “media shy” than younger folk? We were certainly told rather often to “move on” and not to talk about ourselves. Sadly, lack of confidence is a symptom of ptsd.
      Feel free to email me (or others) via this site if you think this may possibly be of any value to you.

      Reply
      1. robinpbotley

        Hello Fred, Many thanks for your response. It is very welcome to have allies like you out there with mediums like this to aid the longing for a sense of ”connection’ to self and community that persists in my life due to the rupture and loss of innocence through our respective infant experiences. May continued healing and realisations come our way and again, big thanks.
        best Robin

  3. Fred Vanderbom Post author

    Thanks for your kind comments, Robin. I know how I too longed to find answers to the questions I had, to “connect” with others who know and understand what I have felt and struggled with, and how healing it has been to link with so many people like yourself. The web has wonderfully made all this possible! And because I enjoy writing, why not share something of what I have received? Yes, may we all continue to heal, grow and share of ourselves. Best wishes.

    Reply
  4. Moya

    Hi
    I was treated medically for ‘spasm of the pylorus’ in 1963 in Australia.
    I recently came across your blog and thank you most sincerely for sharing this information.
    Prior to my birth my mother lost a son to PS probably in 1961, so I am assuming surgery wasn’t a popular option, or perhaps not even widely available in Australia.
    It was expected that I would also die. As luck (apparently, considering the death of my brother) would have it, I survived.
    I have had digestive problems all my life with reflux or regurgitation of food. I have never been able to eat spicy or rich food, and now have chronic gastritis, and am at risk of developing stomach or colorectal cancer.
    The only thing that seems to help is tea! I would love to hear from anyone who was medically treated with similar issues and any success they may have had in resolving any of them.

    Reply
    1. Fred Vanderbom Post author

      Thank you for posting about your story and current situation here, Moya. Sometimes questions like yours get a good response here, and I hope yours does: I’d urge readers who can help you to do so.
      May I also encourage you to post your question on one or more of the large forum sites which get more than the 90 or so daily visits that SIS does? You may already have done this: I’m thinking of the PS Pages on social forum sites like PatientUK, Topix, and MedHelp. I have found that the several Facebook PS Groups have been the most used in recent years. The largest 3 or 4 are “closed”, which means that anyone who is a Facebook member can find them, but to access the contents you have to register for that Group; this keeps these discussions out of the public domain. If you aren’t on Facebook fan(!) and/or don’t want to join, would you like me to post your story and query for you (and without your name)?
      On something else you mentioned, the surgery for PS has been widely used in much of Australia for many years. One of the few PSers I’ve actually met was operated on by the town surgeon in a Latrobe Valley hospital in the mid 1960s, and I’ve met somebody else who had his op in a small town 200 km out of Perth in the 1940s. Sadly it was probably negligent and poor diagnosis that caused your brother’s death. Often, the op is only done when death seems fairly imminent, and medically-treated patients being left to struggle through life with severe digestive problems seems quite common. There are some dozen folk on the Facebook groups who tell a variety of such stories.
      If it’s of any comfort, many of those of us who have had the surgery also live with continuing trouble and risks caused by the high gastric acidity levels which caused our pylorospasm.
      By the way, you mentioned “spasm of the pylorus”… although medically there is a difference between pylorospasm and pyloric stenosis, most people and even doctors confuse them. My parents were told I had “pylorospasmus” – which in fact seems to have been a severe and life-threatening pyloric stenosis.
      Please feel free to stay in touch if it may help. Best wishes.

      Reply

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