Dear Doctor…

An Open Letter to GPs and Paediatric Gastroenterologists

From a mother of a teenager with Coeliac Disease

LISTEN, DON’T JUDGE AND LOOK AT THE BIG PICTURE

Six months ago#,  I took my 15 year old son to the doctor’s for yet another bout of gastro and stomach cramps.  He had been off school for three days which had been preceded by a day off school 10 days previously.

Luckily this doctor, not our usual GP,  listened.  I was convinced that my son must have had some bacterial infection or parasite that just wasn’t going away, as 6 months previously he had missed some 10 – 12 days from school over a period of a month. And this GP listened when my son tried to put into words what his cramps felt like.

This doctor did not judge: he did not judge me or my son and sent my son off for tests.

And he listened.

As I glanced at the request for blood testing, I saw that the doctor was screening my son for Coeliac Disease.

Suddenly, the last 12 – 13 years all made sense.

In September the previous year, I had taken my son to our GP twice to discuss the latest ongoing or recurring bout of gastro and debilitating cramps and to obtain medical certificates for the school.  We discussed the normal treatment which included hydration and a gradual return to food with a dry biscuit or toast. As well, a stool sample was taken.  But I do remember the look I was given: that look which bordered on, this mother is overly sensitive to the workings of her son’s bowel movements and/or maybe this teenager is avoiding school.

Our visit to a Paediatric Gastroenterologist some 12 years previous also saw my son’s problems summarily dismissed.  After some 1 – 2 years of ongoing bouts of gastro, my toddler’s stomach cramps had escalated to the stage that my husband and I took him to the hospital in the early hours of one morning. From there, our GP referred us to a specialist who took a summary of our boy’s health, asked pertinent questions about milk, cordial and fruit juice consumption and then explained that gastro bugs tend to spread among toddlers at Day Care.

“ But our son doesn’t go to Day Care” we said and I then remember the look I was given: that look which bordered on, this mother is overprotective of her son and/or overly sensitive to the workings of her son’s bowel movements.  Suddenly, my son’s health outcomes were judged on how the Paediatric Gastroenterologist saw me.  Did he listen to find out that on the days I worked, my son was cared for by a nanny  or that at home I also had a preschooler and two teenagers? This judgement was further reinforced by his parting comment at the end of our second visit : “And when is your son going to Preschool?”  Our boy was only 3!*

On our return visit to the specialist, and after blood tests which all seemed fine, he commented that he could send us off for more blood tests but he didn’t think this was necessary or he could do an endoscopy but he also believed that this intrusive procedure was not necessary.  I cannot remember him ever mentioning our son being screened for Coeliac Disease.  And the specialist did not mention endoscopy in any context.  And off we went, still without answers as to what our son’s health problems were.

In those intervening 12 years, my son continued to have ongoing problems with gastro, vomitting and stomach cramps.  And we continued to visit our GP for advice and treatment.  Rotavirus.  Giardia.  Tummy Bug. Virus.  He was even tested for Cryptosporidium. We installed a water filter to filter out any nasties but still the bouts continued sporadically.  I suppose after a while, I even came to believe these problems were normal.  It was just something going around, although I never could fully understand why only my youngest always seemed to get that “something” that was going around.

Luckily for my son, it only took 12 years before we found a doctor who listened and didn’t judge and we thank this doctor for looking at the “big picture” and searching for some answers.

My son’s journey is similar to so many others who eventually find themselves with a diagnosis of Coeliac Disease.

And I am sure that these people also wished that their medical practitioners listened, didn’t judge and looked at the big picture.

Always a Mum

January 2013

*Preschool age was 5 years old.

# I wrote this six months after our son KJ was given his Coeliac Disease diagnosis.  It took many months for my anger to subside and be replaced by disappointment  for the many times our family doctor had failed my son.

4 responses

  1. It is at times very difficult, but I learned from personal experience, that we have to question and consider any advice when it comes to our family health. I am not trying to be too clever, or too difficult, but I paid heavy price for blind trust. When your child’s health and all future life is on the line, it is our duty as mothers to trust our instincts. I am very sorry for your son’s preventable suffering.

    1. Your words are very kind. Yes, we have to be proactive where our health and our family’s health is in question. It is just a matter of finding a doctor who is willing to work with you and discuss options and work as a team. It was chance that my son saw his current GP, that visit in May 2012, and this doctor has a team approach and involves my son by talking to him, not at him. This is important when you have a life long disease.

  2. Great post. I’m amazed that so many doctors still don’t screen for Coeliac Disease as a matter of course. Really, honestly. It should just be standard when there are so many unexplained symptoms. I, too, had to convince our GP to do the screening. Luckily, I had family history to rely upon as two family members were already diagnosed. Happily, though, ever since then she’s always paid close attention to my instincts (even when I’m wrong). What a horror for your family, though, to have that go on for over a decade. Your son can’t get those years back!

    1. Having a family member with Coeliac Disease might have helped sound the warning bells. But Coeliac Disease was not on my radar… I talked with the GP recently and asked about the number of coeliac diagnoses he has had recently. He explained that for awhile it was a bit of a catch up…professional reading made him (and other doctors) more aware of coeliac disease so all of a sudden, their diagnosis rates were up. Not because the disease is more prevalent, but purely because he was playing catch up. He said it is a little bit like Vitamin D deficiency… GP’s are more aware of it as a problem, so do more routine testing for it. Of course you get so many people who say “I can’t believe that every second person you talk to has coeliac disease… that can’t be right… is this a bit of a fad?” So I was interesting to have the conversation with the GP about diagnoses rates from his perspective.