Saturday, September 7, 2013

When Doctors Don’t Give You the Information You Really Need

A personal story:

My wife recently took our son Elliot (the latest addition to the family!) in for his two-month checkup. The pediatrician pronounced him healthy, then out came the needles. The two-month checkup could be called the Vaccine Barrage: he got a total of four.

Congyu received a four-page document titled “Your Baby’s First Vaccines.” It contained a lot of information: how vaccines work, which diseases they prevent, when children should get routine vaccines, the various risks of different ones.

The handout also included this:
Most vaccine reactions are mild: tenderness, redness, or swelling where the shot was given; or a mild fever. These happen to about 1 child in 4. They appear soon after the shot is given and go away within a day or two.
The pediatrician told my wife (I was at work at the time) that our son might develop a fever later that day.

Then she left the doctor’s office, missing at least one crucial bit of information.

Can you spot it?

Hint: It has to do with that fever.

Give up? Okay, here it is:

If he does have a fever -- which appears to be not uncommon -- at what point should we be concerned? And here, I’m talking about a real, concrete number. 100? 101? 102? 103? 104?

After all, some children have severe allergic reactions to vaccines, with dangerous fevers that can spike to 105. Also, Elliot is at an age when what would be a “mild” fever for an adult is considerably more serious. Plus, Congyu said that after giving birth, and before her discharge from the hospital, a doctor told her that a temperature exceeding 100.4 degrees was very dangerous for our small child.

I think you can tell where this is going.

Sure enough, that afternoon his temperature was elevated. That evening, a rectal reading (which is regarded as the most accurate way to measure) indicated he was running a fever of 100.9.

So, as concerned parents, what should we have done? Should we have heeded the warning of that first doctor who somberly informed Congyu that a temperature of more than 100.4 was very bad for an infant? Or should we have just accepted that Elliot had a fever, as was predicted, and it was no big deal? Might it be that a 100.9 degree virus-induced fever was a matter of concern, but not a vaccine-induced fever at the same temperature?

How could we know? We were never told.

So we did what most responsible parents would do: We called our pediatrician’s 24-hour help line. The doctor on call heard me out, as I related the details of my son’s condition, then told me not to worry. If we wanted to bring down the fever, we could give Elliot a lukewarm sponge bath, or a small amount of children’s Tylenol (which, incidentally, are other helpful details that we never got -- what to do for the fever, if the child has one).

So there you have it: A four-page handout, a doctor’s advice ... neglecting a critical piece of information -- the actionable “what do I do if a certain condition exceeds a certain level”? Because if I had called that help line, and told the doctor my son’s temperature was 103, or 104, I bet I would have gotten a different reaction. Because clearly the doctor had some (undisclosed) algorithm at work in his head that went like this, “A fever of less than X, just tell the patient not to worry.” What was the magic number X though?

Again, we were never told.

Now what does this have to do with bad knees?

Have you ever been to a doctor who, after examining your knees, recommends that you “avoid activities that cause pain.”

You nod. Sounds sensible. Then, sometime after leaving, you start to wonder: “What the hell does that mean exactly?”

Does he mean just intense pain? What about the mild pain you experience from climbing stairs? And if you have to avoid climbing stairs, what do you do exactly? Or what about if you don’t have pain during an activity, but immediately afterward? Or what if you don’t have pain until the next day?

Granted, these are harder questions than, “At what temperature should I seek medical help if my two-month-old child has a vaccine-induced fever?” But they’re some of the most important questions facing patients whose knees hurt all the time.

Back when I had bad knees, I don’t recall ever getting any good guidance from doctors on how best to “avoid activities that cause pain” while going about my everyday life. That’s a shame. Whether it’s this sort of information -- or specific advice about when to be concerned about vaccine-induced fever in a young child -- I think physicians can do better.


  1. Which leads me to a question I've been pondering about your recovery for some time Richard.

    Did you entirely avoid activities which caused pain/burning? Or did you do things which caused some level of pain/burning which you deemed to be acceptable, as long as it was not too much?

    And were you entirely pain/burning free when you re-introduced cycling into your program?

    cheers, TriAgain

  2. Good question. During my recovery I tried to avoid activities that caused pain and/or burning as much as possible. So I was pretty conservative. I know that's hard, even impossible for some people, because the pain is constant. So not everyone can take the approach I did.

    As for cycling, again, I waited until there were no burning sensations from pedaling the bike. A few times during that year in Hong Kong that I devoted to healing, I did get on the bike and rode a little, and then felt burning down the length of my leg, and said, "Unh unh. Not ready."

  3. Thanks Richard

    It is uncanny how similar our symptoms are. That's the first time I've seen you write "burning down the length of my leg". I also get the burning elsewhere - in the muscles (or what's left of them!) just above the knee and down into my ankle.

    I've been trying to do a couple of Kelseys exercises (twisting punch with band & foot backslide) to attempt to maintain some quad strength, but I suspect I may not be able to handle it yet...jury still out for another week or so though.

    I'm going back to see my GP next week to tell him about my journey over the past 15mths, and ask him about tests for other things (e.g. rheumatoid arthritis etc) to make sure all bases have been covered. Or if we should try something to try to knock out the 'inflammation' (if that's what it is) to perhaps promote some healing. It's just hard to accept my knees are so easily aggravated still....but perhaps that's the truth of it?

    cheers, TriAgain