Research into infant pyloric stenosis

People who had pyloric stenosis (“PS”) as a baby as well as their parents may well feel motivated to find a medical organisation that is researching this strange condition.

Having had PS very early in my life and struggled with some of the possible after-effects ever since, I have studied the disease for many years and blogged about my discoveries for almost two years.

Readers of my blogs here (as well as comments elsewhere) have asked me several times where they might direct some funds to further medical research into PS – and I believe with considerable justification.

Both parents and patients often have questions about or experiences with PS that cry out for a clear answer or sound advice.  Many of these people report their frustrations on the web: they are all too often fobbed off, spoken to with condescending dismissal or bland non-answers, or with attempted information which they later discovered was incorrect or inadequate, or by kind reassurance which they later found to be ill-founded.

Some of the questions about PS that need more research or are often dealt inadequately are –

What causes this weird condition?

Can PS be avoided if it’s in my family?

How does the genetics of PS work?  If I had PS will my baby?

When PS strikes can surgery be avoided?

How is PS best treated?

Are there after-effects of PS and of surgery on a tiny baby?

How can the risk of after-effects be reduced?

How will the scar affect a pregnancy?

Is there a link between PS and other conditions of infancy or later life?

On the basis of my reading it seems to me that –

1                    Because PS is quite common in the “old world”, has been recognised for well over a century, and has been treated with a rapidly falling death-rate now for a century, we know much, much more about it than 100 or even 50 years ago.

2                    Despite this, it may seem surprising that many of the above questions have not been answered fully or with certainty.  Many are too often met with sheer ignorance, or answered incorrectly or simplistically.

3                    So many of the medical journal articles and reports dealing with PS examine a subject area that has been reported on many times by many teams.  One wonders how many times pediatric surgeons need to be given statistics and pros and cons for the several techniques of PS surgery or told about the pros and cons of imaging as a diagnostic tool.

4                    Only a few attempts have been made to coordinate and compare the results of similar studies to arrive at a more significant set of conclusions.

5                    I have not found even one organisation devoted to research this most common of all the conditions of infancy that require surgery in the first few months of life, or to gathering and coordinating worldwide PS research projects.

6                    However, I have found one website, RightDiagnosis.com, which offers an information exchange on the existence, aims and needs of current research projects dealing with PS (click on this link to have a look).

7                    Some of the people affected by PS as patients or as parents have the motivation and the means to contribute to a well-run medical research organisation.  Such bodies exist for many of the more serious conditions of the heart, lungs or digestive system, but it seems not for PS.  If this is incorrect, please let this blogsite know by a Comment or just email the writer!  We’d love to pass on any good news.

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3 thoughts on “Research into infant pyloric stenosis

  1. Wendy

    What an excellent list of questions you’ve provided. I also appreciate your points about PS not getting its due from researchers. It is amazing that the cause of PS has not yet been nailed decisively (although Dr. Ian M. Rogers has decisively driven in the nails, in my opinion) and that much of the information gathered from studies is not centralized or systematized. Regarding RD.com, given that you’re informing us about its existence, I’m sure the information it offers is sound. What I find concerning though is that when I clicked on “About Us,” I could find no identifiers. The goals and intentions of RD.com are presented, but it does not give the identity of the information providers. Are they doctors? Are they health practitioners? Are they lay people like yourself with a huge amount of medical information to share in the hopes of helping others? In any case, please fill me in if you know. Many thanks.

    Reply
  2. Kelly Jennison

    Hi Fred
    A great list of questions you’ve asked there.
    My son had Pyloric Stenosis when he was 3 weeks old he is 4 months old now and he is finally catching up to where he should be.
    This was a horrible time for us and an even more horrible time for him I am sure, I am pretty sure that the hour he was in surgery was the most nerve wracking of my life.
    I have been in contact with a doctor here in the UK who has been researching PS and I would be more than happy to give you her details.
    If you don’t mind I would love to take your questions and pose these to her for some responses, I will be more than happy to pass the responses to you and until you confirm it’s ok I won’t ask.
    I am in the process of setting up a charity here in the UK to help raise awareness and raise funds for research into PS and the causes as this does need more thought and the causes behind it.
    I look forward to hearing from you 🙂

    Kelly J

    Reply
  3. Fred Vanderbom Post author

    Thank you, Wendy and Kelly, for your responses and the matters you raise.
    Wendy, although as you know I do a lot of research and try to be responsible in what I write, the questions you ask tell me that my thoroughness has slipped here. Woops, “mea culpa”!
    I have not researched RD.com but my poking around their website showed me they are “in touch” and thorough, though probably not exhaustive in terms of the projects listed. This gave me the confidence to pass on the link, at least for my purposes. When it comes to the donation of funds, “caveat emptor”: beware! We must do our own homework. An added reason I was so grateful for my link with Kelly and her Comment here.
    Kelly, please feel free to raise the issues I have listed with the doctor you have in mind, and please feel free (with her ok) to give her contact details here or in an email to me (via the About section of this site). And if you are considering setting up a charity in the UK to help raise awareness of PS and funds for its research, again, please keep us “in the loop” here.
    As you are aware, Kelly, last week I added my name to a Facebook Group that has a large number of parents committed to raising the awareness of PS. This should be a useful part of the chain also.
    Allow me to emphasise again that the questions I asked in my post identify issues and areas for closer consideration. Some of them are easily answered but perhaps inadequately researched, others often far too glibly.
    Kelly, I’d also encourage you (if you haven’t done so already, and before you speak with your doctor contact) to read my posts on the “theory” of Scottish pediatric surgeon and professor Ian Rogers (my posts dated June 1 and August 17 and 24). These posts include links to his two reports which Wendy and I (as informed but lay PS-followers) find so telling, and his emails to us have been even more revealing.

    Reply

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