Is there a mild form of infant pyloric stenosis?

This is a question that recently brought a reader to this blogsite.  It is often asked.  Here are some of the facts.

Many pyloric stenosis cases don’t go to the operating room.

Despite years of scanning the mass of information and reports available on the Web, I have never seen a set of statistics on the percentage of Pyloric Stenosis (“PS”) babies who are operated on to save them from wasting to death.  From what I’ve been able to find, there have been many studies on aspects of PS, but never on how many cases are “mild” enough not to go to surgery.

So I can only quote my personal experience as some sort of indication.

Two of the first four PS survivors I came to know did not have surgery and the other two did.  Of course it’s well-known that statistics can mislead.  The fact that the two guys who had surgery also had a scar similar to mine was probably quite normal when all three of us were much younger, but even then it was certainly not representative in the USA.  The vertical midline approach to a troublesome pylorus muscle used to be quite common in many countries, but in recent years it is hardly ever used for various interesting reasons.

More indicatively, since that dawning of my awareness that I was not the only person on the planet to have had surgery that I couldn’t remember (how naïve we all were once!), and that there were others who’d struggled with PS but without surgery, I have met and read of many others whose PS was not life-threatening enough to risk surgery.

Untreated pyloric stenosis doesn’t always kill but it can niggle

There are many stories “out there” of babies, children, teenagers and young adults who continue to have many of the symptoms of a mild form of PS.  Some of them wonder if surgery might relieve them of their troublesome stomach problems.  Others have chosen (or needed) in later years to have their pyloromyotomy to get relief from continuing stomach trouble.

On the basis of the accounts of so many parents, it is clear that some if not many parents and babies never quite reach the point where the defective stomach valve is actually threatening the very life of the baby enough for somebody in the health care industry to agree to the necessary checks and tests.  So the vomiting, deeply frustrating feeding and retarded growth continue on over months or sometimes years.  It seems many babies but not all grow out of untreated PS during infancy.

Sometimes the cause of a baby’s reflux and severe vomiting is not PS at all but an irritable bowel or severe reflux, neither of which cause weight-loss and a deadly loss of wellness.  The cause may also be another, less common but perhaps just as deadly a malady of the gastric passage or another abdominal organ.

Not all pyloric stenosis is actually diagnosed.

In several recent posts I have reported the frustration of parents about the reluctance, even the refusal of many pediatricians to test their baby for what they were sure was PS or another serious condition of infancy.  Tests take time and money, baby blues can be caused by any of several possible problems, and too many doctors are inclined to brush new parents off as over-fussy or ill-informed, perhaps to await how the problem develops, or perhaps simply because they want to move on to the next patient.

PS is too often ignored and left undiagnosed until the baby’s life is in severe danger, obviously so to the family and it seems often recognised as such by medical staff members who were not directly responsible for the tardy diagnosis.  Because of this, there will be many milder cases that escape medical diagnosis and the knife.

Many pyloric stenosis cases can be dealt with by medication.

This is really a subject in its own right.  In historically Caucasian countries with developed economies, the medical treatment of PS with atropine sulphate is usually given scant consideration.  I will explain and discuss the reasons for this in another post soon.

Atropine treatment is a muscle relaxant that allows the pyloric muscle to open and shut without surgical intervention, but because of its effect on muscles it must be introduced over several days and under careful medical supervision.  This atropine treatment has been used for many years by a small minority of 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 1) know the symptoms of PS well, 2) have gathered strong set of evidences of their baby’s condition and perhaps have previous experience with this malady, and 3) whose baby is not close to death may well consider seeking medical treatment for their much-treasured and still near-perfect recent arrival.  It must be realised that the safe use of atropine sulphate medication requires early diagnosis and a baby whose condition allows the several days necessary for the drug to have sufficient effect.

I am not alone in having had significant difficulty coming to terms with infant trauma and my scarred body, especially in my younger years when I was slim, sleek and handsome!  Although like many survivors I have now come to embrace my scar as a key part of my survival and life story, I would certainly have opted for first trying a course of medication if I’d had a say in this.

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19 thoughts on “Is there a mild form of infant pyloric stenosis?

  1. Lori Gallagher

    Hi i want to thank you for your posts and actually have a question for you if you wouldn’t mind answering. I have searched all over the internet for symptoms of children with pyloric stenosis and as this is primarily an infant problem I can’t find anything. I have an 8 year old son that I have had problems with vomiting since the day he was born. His pediatric doctor at the time (I switched doctors at I believe he was 9 months old due to him not helping) finally decided he had GERD. My son never lost weight but he vomited and nursed ALL DAY long. When I say ALL DAY I mean 23 out of 24 hours a day and he would only sleep in like 15 min intervals. He ALWAYS cried – I mean always. I believe the doctor didn’t believe me or something and that is why if it is PS it was left undiagnosed. He has continued to vomit and have severe cramping on and off for his whole life. Sometimes it will go in spurts and one thing that happened for a couple years straight was he would get a headache when he went to eat or while he was eating and then he would throw up and the headache would go away. It still happens now but the headache has not been as frequent. So really my question is do you have any information on a child’s symptoms if PS was left undiagnosed what this can cause on them. He is in very low percentile for height and weight at his age. He is 8 and he is only 59 pounds. My tiny daughter is 6 and she is 52 pounds. I am just wondering if this is what has caused him to maybe not grow as tall or gain the weight like he should have if he was properly diagnosed? I really appreciate any information that you have on Pyloric Stenosis. Thank you so much.
    Lori

    Reply
    1. Fred Vanderbom Post author

      Lori, thanks for the question. I feel distressed by what you have written, both by what you and your son have gone through and by your not being able to find a doctor to do some careful diagnosis so as to give you the advice and help you both need.
      You will realise, I trust, that not being able to test your son, and not being a trained medical worker there is little I can do – except to mention these things –
      1) You have found the right internet page I have posted on this issue: if your son has a PS it is so very true that “it may not always kill but it can certainly niggle”. Yours certainly sounds like it could be a case of mild PS. A severe case would have taken your son away long ago, and a problem is that the medical world is trained to take on only babies who are close to death from vomiting, unless the symptoms are very severe.
      2) You will also realise there are many cases like your son’s, with gastric problems of which the cause is not clear, and so they are hard to treat. To get attention for your son’s issues, you could check for one of the signs of PS, the peristalsis – waves of stomach muscle movement across the stomach after a meal and just before he vomits. But PS that is serious enough to treat has several other symptom which your son doesn’t have – weight LOSS, dehydration, loss of bowel motions, and lack of bile in the vomit. You could (if you can find a sympathetic peditrician or GI specialist, and have the insurance or funds) insist on having him xrayed and given an ultrasound scan to see how much food is getting through his pylorus.
      3) A third line is to find a doctor who will prescribe and teach you how to use a form of the drug atropine. I have written about this several times (use the Categories or Search boxes). It relaxes the pylorus to let food through – but also affects other parts of the body, of course. This group of drugs is used extensively in countries like Japan, making the operation unnecessary in about 80% of cases. If your son reponds to drug treatment, you have at the very least learnt something to help him and you.
      Please let me know if you have more questions or I can give further help.
      Best wishes.

      Reply
  2. Rebecca

    Lori, I just wanted to post to share my experience. My son is nearly 8 months old and has also had problems with persistent vomiting, being very unsettled and slow weight gain from birth. Our local hospital finally diagnosed pyloric stenosis when he was 4 months old and sent us to a specialist hospital to confirm the diagnosis. However, their ultrasound measurement was marginally different but enough for them to exclude pyloric stenosis and therefore surgery. Fast forward 4 months and a lot more vomiting (and distress), and an endoscopy has shown my son has a narrow pylorus! And the doctors are now admitting that he was borderline pyloric stenosis all along. We are now trying to get the surgical options considered as my son can’t digest any solids and is still in a lot of pain. My fear is that he may continue to have these problems for years if he is not treated now. I just wanted to share my experience because it seems like there is little recognition of milder forms of pyloric stenosis in the medical field. Nobody believed me that my son had this but I have remained convinced that his symptoms pointed to PS. This site and a few others have helped me to believe in my gut instinct. I really hope you can get some help for your son and get the right tests to find out whether his pylorus has been the cause of his ongoing problems.

    Reply
    1. Fred Vanderbom Post author

      Thanks so much Rebecca!
      I can only put together and pass on what I read and have experienced myself.
      It is so important for folk like you with a significant PS story to share your own experience and observations.
      Best wishes to you, and for your son to get this disheartening part of his growing up taken seriously and dealt with properly.

      Reply
    2. Kristin

      Rebecca, I realize this post is years old but I’m in this same exact situation right now with my 14 montb old. I was wondering how I can contact you? My email is kristin_nicole88@hotmail.com if you see this comment, please email me. I have many questions!

      Reply
  3. Rebecca

    Thanks Fred. And thanks also for taking the time to create this website for others to benefit from – it provides such a useful source of information and raises awareness of some really important issues.

    Reply
  4. Nicole Codr

    My son is 5, and has never eaten solid foods. He has had projectile vomiting since he was a baby. We just went to the doctor and he mentioned he thought P.S. is what he could have. Do these symptoms sound like what this could be? I’m new to all of this.
    Any help would be appreciated….

    Reply
    1. Fred Vanderbom Post author

      It certainly does sound like it could be a mild form of PS, Nicole.
      It would need a few tests to confirm it, as there are several possible reasons for such stomach problems. Ask your doctor to send you to a good GI specialist who will treat your concern seriously, as many will dismiss you with condescending words, I’m afraid – just read what countless people have written on web forums.
      If it is PS causing this, your boy may be able to avoid full surgery. An endoscopic stretching (done with a tube down his throat) of the pylorus or medication may be all your son needs to get relief.

      Reply
  5. Jessalyn williams

    I just stumbled across this site doing research for my 5 week old girl. I took her to the GI doc at 4 weeks because she was vomiting after every feeding. I had already tried her on zantac and omeprazole because I thought it was just bad reflux. Doc had us have an upper GI series and an ultrasound. GI series showed an “almost” pyloric stenosis. We were told the opening was about a centimeter. But not small enough to call it actual pyloric stenosis. The radiologist mentioned possible pyloric spasms. Because it wasn’t deemed an emergency we weren’t admitted to the hospital, even though I almost took her there myself the day prior because the vomiting got so bad. The confusing part in all of this is that the ultrasound tech also said this wasn’t an emergency, and sent us home. She didn’t confirm that slight pyloric stenosis was identified on the ultrasound or not. I am still waiting for the doc to call with the ultrasound findings.
    With mild PS, would surgery help?? I can’t imagine my poor baby girl living like this for much longer. She’s still gaining weight so she’s obviously keeping enough down. But I’m worried that pretty soon she’s not going to WANT to eat because of the vomiting afterwards.
    I hate the idea of surgery, but I hate her living like this even more. Would surgery help a mild case at all? If so, I think I’m going to push to have it done.
    And do you have any info on pyloric spasms? There’s not a lot of info on the web about those. Do you have them forever? Do you grow out of them? What triggers them? Thank you for any input!!

    Reply
    1. Fred Vanderbom Post author

      Jessalyn, I’m so sorry to read your post. You and your little girl are caught in that awful “no man’s land” that sometimes comes with PS, and you’ll find it hard to get a doctor or surgeon to take your concern “on board”, let alone agree to surgery. Pylorospasms, non-lethal PS, and PS surgeries that fail to resolve the blockage are indeed poorly documented, and not always a long-term problem, but I have on file many accounts from parents and adults with ongoing issues. I’ve seen little or no medical research on any of these problems – statistically it seems they are neglected as not significant enough. So patients just have to muddle through. The cause of PS is high acidity caused by a list of possible factors; the spasms are even less understood but may perhaps be like hiccups of the muscle ring.
      Sorry to say, you will have to struggle through unless your baby is losing weight and condition. If you are on Facebook, I encourage you to join the “Pyloric Stenosis Support Group” and the “Awareness of Pyloric Stenosis” Group. Both are “closed” so you’ll need to join to read much of the valuable and supportive discussions. I also encourage you to keep a record of your daughter’s progress or lack of it, and to use this and perhaps take a support person to any future medical consultations. Diet, feeding changes and medication may each help. I hope this info at least helps you find some hope and means of helping your little one. Best wishes!

      Reply
  6. Lisa

    Dear Fred, Thank you for what you are doing. History; according to my mother, I projectile vomited every feeding for my first five months of life. However, I did continue to thrive and gain weight. All through childhood I had severe stomach aches, and as a teenager and young adult I would bend over and deep massage my abdomen to “move things along” and ease the pain. . Sometimes I vomit during a bowel movement when I am not ill. I have always suffered from either constipation or diarrhea. As an adult I have to avoid dairy and wheat products and still suffer from SEVERE BELCHING and often sleep sitting up. I seem to improve if I take an herbal laxitave on a daily basis. I worry about doing that. The dr. is dismissive. Do you think I could be a survivor of PS or does it sound more like lifelong GERD to you?
    P.S. I would gladly trade my lifelong suffering for a stomach scar anytime!

    Reply
    1. Fred Vanderbom Post author

      Many thanks for your Comment and encouragement, Lisa.
      Since I wrote this post in 2011 I have learnt that many “mild cases” such as your history can be put down to having had Pylorospasm and not Pyloric Stenosis.
      Although there are many reports of doctors being far too unaware or tardy in diagnosing PS, one of the reasons some are reluctant to diagnose it is due to this difference. Just one or a few questions or tests will tell the difference. As you report from your mother, pylorospasm doesn’t cause dangerous weight loss and dehydration: because the muscle spasms but does not thicken to totally close the stomach’s outlet, nourishment still gets through. The spasming will respond to drugs that relax the muscle, and the baby continues to grow despite the frustration and mess!
      However, I have also learnt that many of these infants have continuing gastric problems like yours, some are diagnosed belatedly as PSers, and some have decided on surgery rather than continuing endlessly with medication, pyloric dilations and other procedures. I do hope you don’t get to that point.
      If you get too fed up with your symptoms, you could ask your doctor to refer you to a GI specialist and if necessary insist on not being brushed off. Uncommunicative doctors must be pressed a bit. It certainly seems to me you have GERD, IBS, or another condition affecting at least part of your gastric passage. However, surgery is not without risks and possible ongoing effects, and like many PSers I have mild IBS and am careful to avoid some foods.
      If you are interested, Facebook has several “closed” Groups about the various issues around infant and adult PS and pylorospasm, and by joining you’d have access to other’s experiences and discoveries.
      Must agree with you: if I’d have had the choice between having a scar and your “issues”, I would have chosen your lot! Despite having worked through my troubles and wearing my scar with some pride now.
      Best wishes!

      Reply
  7. Vish

    Hi Fred

    My daughter is around 10 weeks old but she is having mild PS since the 2nd week from her birth.
    She is gaining minimum weight but I can feel her pain because she vomits after each feeding and sometimes multiple times after one feeding.
    Doctor is just concerned about her weight but more worried about her over all development. She always feels like vomiting and can sleep maximum for 15 min.
    Much worried about her health.

    Reply
    1. Fred Vanderbom Post author

      Your and your little girl’s situation is one of the most difficult kinds we can have with PS, Vish. Most doctors will not risk surgery if the baby is gaining weight, even if it’s minimal. From what I have read, development is more affected by serious hunger and weight loss than by slower-than-usual weight gain, but your doctor will know better what to expect and if she should have the operation soon. Nobody knows whether your little one will grow out of her mild PS (like many do with for example asthma and tonsillitis), or whether the PS will continue to trouble her to the extent that she needs surgery later. Watch her development closely, keep in touch with your doctor, and continue loving and comforting your little girl.

      Reply
  8. Mai Jordan

    thank you for the post, I searched the net because my daughter who is 10weeks old is having problems with keeping milk in. She is only on breast but vomits after every feed. My husband and I thought it was because we were failing to burp her. We couldn’t burp her most of the time because she does not burp easily, we have tried every position recommended on the net. However when we took her for weighing today we noted her growth chart is not looking good as she is in the mild underweight category. We are in Zimbabwe, Africa and wondering whether to ask our doctor to prescribe Atropine Sulphate as you recommend. Surgery is not a good option for us . However, are there no herbal remedies for such?

    Reply
    1. Fred Vanderbom Post author

      Thank you for your question, Mai. Your daughter is losing weight is a warning that something is wrong, but as the loss is minor (as you mention) you have time to try medical treatment – and keep monitoring her weight, output and general condition (dehydration and undue sleep are also warnings). Atropine sulphate is the old basic drug which is currently prescribed in a modified form as Ranitidine or Zantac. It is widely used to reduce stomach acidity which is the trigger for PS as well as ulcers in adults. I have not come across herbal remedies in relation to PS. Medical treatment takes time and patience, sometimes in great amounts, and stomach issues may continue to dog your daughter – but this can also happen after the surgical remedy. Best wishes!

      Reply
  9. Cristy Balch

    I know this is old but it’s hard to find anything on this with older kids. I have a 14 year old son who also had the vomitting as an infant. They actually had us use Enfamil with AR to thicken his milk to try to get it to help. Our doctor didn’t want to do anything unless he wasn’t gaining weight. He was always small. About age 3 things changed and he started doing better. Never had any stomach issues and started eating normal. Well, about 6 months ago he started vomitting again. Worse in the evening. He lost 12 lbs in 6 months. We continued taking him in, trying to find answers. This has led to depression. He just wants to be a normal 8th Grade athletic kid. After labs coming back good all around, I wouldn’t stop. I knew my son was sick and it wasn’t in my head. I asked for a CT scan. I got a call today and he has thickening at his pylorus. We are being referred to Children’s Mercy GI clinic. Is this something that he could had been born with and then later can flare up? Or would this be caused from something else?

    Reply
    1. Fred Vanderbom Post author

      A blog is not quickly too old to add a question or response.
      It is quite likely that your son’s PS has flared up again, and his age and history considered, it’s very unlikely that his problem is due to anything else. The scan seems to be pointing in that direction.
      Doctors usually try to avoid infant surgery unless it’s life-saving, as there are always hazards with surgery and especially for infants. And it seems from the literature (mostly medical reports) which are available to us lay-people that PS if initially survived settles down.
      However, when it does, people will rarely report that – they’ll just “move on”! Still, I have known at least 2 people who had PS as a baby, had no surgery, and seemed to be trouble-free.
      What we do find on forum sites like Facebook’s “P S Support Group” are not a few posts from people like your son. Sadly, what seems typical of their stories is several uncomortable and unsuccessful attempts to stretch the pylorus – often followed by a surgical procedure.
      Two such are available: pyloroplasty and gastrojejunostomy (a by-pass of the pylorus). Both (again) get far from an enthusiastic write-up (- perhaps from an unhappy and vocal minority?). Tampering with the digestive passage is also hazardous.
      So do your homework, try to get good advice, be your son’s informed and active advocate!
      Best wishes.

      Reply

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