A 1975 article on the difficulty of diagnosing some cases of infant pyloric stenosis (“PS”) underlined the sympathy I have for medical doctors: these important professionals have to be across thousands of symptoms and medical conditions, on good days and less easy ones, and also across the latest findings and journal reports… and up to dealing with upset or just plain difficult people, and with their receptionists and colleagues. Is it any wonder that we, the general public, tell and retell many GP and MD stories that are not all that flash?
This blogsite includes several posts about this, warning parents of sick children to –
1) do their own homework,
2) be your child’s best and well-informed advocate,
3) take somebody supportive if needed to what may be a difficult consultation,
4) stand your ground if it is solid, and
5) if all else fails, get a second opinion, go to the hospital Emergency Department and find another doctor.
Far too often I have quoted or commented on the stories of some parents of PS babies are outrageously out of order. See the “Topic Categories” box (upper right of this page) to find some of the stories of parents and PS patients (at the list’s bottom).
Having mentioned the sad and bad stories again, I have also written about the complexity of diagnosing some cases of PS (see “Pyloric Stenosis – Diagnosis” in the Topic Categories). The 1975 report I mentioned above deals with four unusual but not abnormal PS cases, and this report has told me more than it actually says. Click the link above to read the entire and (to me at least) interesting 1975 report which I will overview and comment on here.
It is stated of 3 of the 4 babies that their PS showed itself quite clearly within two weeks of their birth. All 4 were eventually operated on – but not until well after the normal “window” of “3 days to 3 months” for the majority diagnosis and treatment of PS. As I understood the report, the youngest was almost 4 months and the oldest 9½ months at surgery. What happened?
- their vomiting was unusual, sometimes subsiding or intermittent,
- although all failed to thrive and gain weight normally, they never fell below their birth weight;
- gastric peristalsis (muscle movement across the upper belly after feeding) was often weak or absent and didn’t cause the usual cramping, pain or distress;
- the swollen pylorus could not always be felt (“palpated”) and did not always show clearly on x-rays.
- their vomit was bile free, showing their stomachs were blocked,
- changing or thickening their milk or formula and keeping them upright after feeding did nothing to remedy their condition, and
- medication with antispasmodics to rule out pylorospasm (in which the pylorus spasms but does not thicken and block the passage *) and confirm gastric obstruction brought no relief.
Yes, my complaint about doctors’ poor attitude and diagnoses has been often and clearly stated on this blog. But in the light of this report it should be clear that –
1 When there is a family history of PS, when parents are experienced, when they show they have done their homework, and when several of the symptoms of PS are clearly present, a wise doctor will agree to immediate further tests, with good reason (see below) although this is something that is commonly resisted.
2 When there are some symptoms suggesting PS but not enough evidence for a diagnosis of PS or another condition it would also seem sensible to run further tests.
3 When no clear diagnosis of PS is possible it is necessary to eliminate other abdominal conditions including pylorospasm from the doctor’s considerations. This may be done by changing the feeding regime (as mentioned above), trying an anti-spasmodic medication, conducting further tests, and/or by waiting for a week or so and then if necessary repeating some of the tests.
4 Waiting will be difficult for anxious parents of a small baby who is losing weight and condition. A good doctor will understand this and convey empathy as well as working through what such parents may need to watch out for and do in the interim if necessary.
5 Again, if the doctor is not supportive and seems negligent and especially when the baby is clearly losing condition (losing significant weight, not soiling diapers / nappies and not urinating, appears drowsy and is sleeping excessively) it is high time to bypass the family doctor or paediatrician and insist on the local hospital taking responsibility – and urgently.
What eventually did help the four babies in the report was the comparison of their earlier with more recent x-rays: there are several typical radiological (x-ray) signs of PS, all of which are not always evident or clear from one series of images, but do become so by comparisons.
What did I learn?
1 The report shows clearly that when it is not possible to diagnose PS with confidence (and what parent, patient or doctor wants unnecessary surgery or medication?) a careful process of tests, management and observation will clarify the real problem.
2 PS manifests itself and can develop in a variety of ways. Although most cases arise along textbook lines, there are occasionally exceptions to the “rules”. Case 3 (a 7 month old girl) is the clearest example of this: her case should be read in full by interested readers. Her PS was evident at 10 days but seemed insufficiently developed at her first pyloromyotomy at the age 7 months and she needed a second operation at 9½ months when a fully developed PS was found.
3 It will be clear that these four cases were different from other groups of PS sufferers, including the “late onset” infants who first show PS symptoms after age 3 months, and the mild PS cases who are not considered as needing surgery, perhaps treated with medication, and sometimes continue to live with the signs of mild PS, to the extent that some of them seek a pyloromyotomy later in their childhood, teenage or adult years. There are numerous stories from and about such PS sufferers on the web.
4 Once again there was a loud silence in this 1975 report about the medical treatment alternative for PS babies. This blog has often urged that medical management of PS be tried before surgery is even considered. The “Topic Categories” box (top right of page, “Pyloric stenosis – Medical treatment”) will give the links. Medical treatment of PS is of course slower to take effect than surgery, but it controls the condition in 70-90% of cases (depending on which report you read), makes good use of the time lag that is necessary to eliminate the possible diagnosis of pylorospasm, can always be set aside for surgery when necessary, and is non-life-threatening and non-traumatic for both baby and parents.
5 Parents can learn from this 1975 report and (I trust) my post about it. It underlines the need for parents to be as well-informed as they can be: to be their baby’s best possible advocate, they will know about and understand the symptoms of PS, will ensure that their medical consultants are exercising their duty of care, and will be willing to “change horses” if necessary.
This may sound presumptuous and “a big ask” of distressed parents, but as I have explained, it is far from impossible, especially with the help of a suitable supportive family member or friend.
Realize that the life of your little one may be at stake.
Today, medication, anesthesia and infant surgery for PS are almost always safe. But from what appears on the web, the negligent delay, diagnosis and treatment of PS are the most frequent killers of PS infants.
* What is the difference between pyloric stenosis and pylorospasm?
Narrowing of the pyloric canal is a common finding in infants with chronic vomiting, and it is most often due to pylorospasm. In such cases, there is no thickening and hardening (hypertrophy) of the pyloric passage, causing it to narrow (“stenose”), and the spasms (contractions) of the pyloric muscle can be treated by modifying the feeding technique and/or with an anti-spasmodic drug.
When the vomiting persists, a question arises as to whether it is due to pyloric stenosis. Distinguishing between the two conditions is difficult but important, for while spasm can be treated medically, true stenosis (physical narrowing) may require a carefully managed course of medication or surgical intervention.
Some believe that surgery is the only remedy for true pyloric stenosis and that all cases that respond to medication only had pylorospasm; this has been rejected in the light of studies of diagnosis and treatment.