Tuesday, August 10, 2010

Journeys in the wilds of Medicalia

Last week I took Elissa for another visit to the ophthalmologist, which resulted in much angst, frustration and anger.

The back story to explain how I got to condemning the whole of the medical profession in a single tweet is worthy of sepia tones and darkened edges. When I was a kid (about 18 months old), I had a squint - otherwise known as a turn in the eye. It was corrected with surgery, but I was also found to have a lazy eye. Thus began many, many years of glasses, eye patches and visits to doctors which ended, finally, one afternoon when I was about eight. I sat on the front step of our house and looked at the telegraph pole across the street. I looked at it with and without my glasses, about 30 or 40 times before deciding that I could definitely see better without them, and burying them in the garden. This didn't get me in the shit you may imagine, because my mother had also given up on the palaver at about the same time and quite possibly didn't even notice.

Then when I was twelve, in a fit of Responsible Parenting, my mother took me off to a specialist one more time before I went to high school. He looked at my eyes and listened to my history and got very excited and called in other colleagues. Apparently I had some condition which was genetic (classically dominant, I was told). It resulted in my optic nerve failing to develop correctly and no amount of patching or wearing of glasses could possibly have done anything to change it. He declared that my father had the same problem, and my father suggested he had inherited it from his mother.

We all went away satisfied that we knew what the problem was and that was that.

But like all good soap operas, it doesn't end there. When I was pregnant with Elissa, the mutation was discovered. The geneticist I was seeing felt there was unlikely to be any connection between my genetic eye problem and the mutation on my 15th chromosome, but sent me off to an ophthalmologist who specialises in this sort of thing just to be sure. She declared there was no such thing as the condition I described, and announced that my poor eyesight was due purely to a failure to comply with the patching regimen. (To quote her: "If you're only patching for a couple of hours a day, there's no point even bothering". I was patched all day, every day, for months at a time.) I was Unimpressed. (Anyone who knows my mother, knows that if she agreed to patch, patch she did! There was no question of non-compliance.)

By that time, Charlie had been under the care of a wonderful ophthalmologist at Randwick for nearly a year for his squint, and was being scheduled for surgery. That all went well, and I ignored the unhelpful woman I had seen and time passed. *insert wavy lines, cut to recent past*

This year, we realised Elissa also has a squint - a much smaller one than Charlie. Unlike Charlie, though, she has bad sight in one eye to go with it. And because this is a soap opera, there was a clerical error when the booking was made to see Charlie's doctor, and Elissa was sent to see another doctor. This doctor appears to be an excellent teacher. I say this, because he barely speaks to me, only to whichever registrar is looking after us on the day. I value teaching, but it would be nice if noticed we were in the room. Each time he's seen us, he's asked if he's ever seen us before, and there was no recognition when I said yes.

So far I've doubted a number of the measurements they've taken, and now they've recommended patching. For an hour a day, because, to quote this doctor, "You don't want to patch more than a couple of hours a day, because it affects the development of stereo vision." They suggested 8 weeks of patching, but I can't actually get an appointment for 12 weeks, so the poor kid has to go through this for 12 weeks, with no guarantees of success. And yes, I argued, and asked to see another doctor, and was fobbed off.

The orthoptist was the only person listening at all, and she's scheduled an appointment to see her only at about the half way mark just to make sure there is more than one review in 12 weeks.

I'm furious with this situation. The only reason I haven't been transferred to the doctor I was referred to is territorialism. There is clearly no consensus on patching or how it should be done, but there is no discussion as to the pros and cons. I have no choice but to go ahead with at least one round of patching, because for a small percentage of kids it works, and if I haven't given it a shot, I'm a Bad Parent. Added to that, if I don't give it a shot, I'm a Non-compliant Parent, which makes it hard to get any doctor to provide real treatment.

All the time, my gut tells me she has the same problem as I do, and all this will be for nothing. Unfortunately, I know perfectly well that my gut lacks real evidence, and has been known to be wrong before. So I have to play along until I have enough evidence to make a truly informed decision. I just know that I'm going to have to fight for that evidence, and I don't think it's reasonable that I have to find the energy for the fight as well as the treatment.


  1. I'm afraid all I can offer is sympathy, but that you can have in bucket-loads. This sucks :-(

  2. This is an unbelievably frustrating story. I can't believe how much of healthcare adds up to drifting unguided through the health system with a diagnosis and treatment determined by the randomness of how much effort you put in to continuing your investigations, how assertive you are, and what specialist you happen across on any given visit.