Rules, Damn Rules and Statistics

I have been thinking about rules a lot recently. I live in a house with two ASD kids, so rules are a big part of my home life. Here are examples of some of the more colorful rules we have had in the past:

• We keep our shoes and clothes on in restaurants.

• No rocks in the house

• We don't growl at friends (or at anybody).

• We don't lick Mom

• No sniffing the Dominos man (it really freaks him out!)

• No feet on the dog

• We wear clothes and shoes when we go outside.

Most rules are good. Most rules are sensible and designed to help in some way. We don't put our feet on the dog or he might bite us. We wear shoes and clothes outside so we don't freeze to death, don't cut our feet and don't freak out the neighbors. Rules created with thought and purpose are good.

In diagnostic medicine there are a lot of good commonsense Rules. If a person arrives into the ER complaining that their knees hurt, there is no point in giving them a chest x-ray.  You know, stuff like that.

Damn Rules, however are another story. Damn rules are arbitrary and seem to have little logic or purpose. Damn Rules are rampant in diagnostic medicine.

I remember when Grace was about 9 months old, I took her to the doctor.  She was vomiting with a fever. It was my second trip to the pediatrician's that week. I had been there a few days earlier with a feverish, vomiting Joe, who was about 2½ at the time. They had tested Joe for Strep, it was positive. Antibiotics. Done.

I figured it was only a matter of time before Grace got Strep too -those guys were complete germ factories. So as soon as she threw up, I took her to the pediatrician's office.

The Pediatrician walked in to see Grace.  "What's the problem?" he asked before he was through the door.

"She has a fever and she vomited. Her brother has strep, so I thou..." He interrupted me quite brusquely "It's not strep" he said in a very finite way.  He had barely looked at her, hadn't laid a hand on her. What is this? I thought to myself Psychic Medicine?
"How do you know?" I asked, agog.
"Babies under one don't get Strep." he said, dismissively.  "It's probably a virus"
"...But  ....but her brother has Strep and she has the exact same symptoms."
"It doesn't matter. Babies under one don't get strep"

He started to examine Grace, while I pondered this statement. Finally I asked a question that was bothering me.
"How does the strep know?"
He was confused: "What?"
"How does the streptococcus bacteria know how old she is?  How does it test her age (and why does it care)?"  How can it tell the difference between an 11 month old  baby and a 12 month old one?

He looked at me for a minute. spluttered, stopped, looked at the child then asked "what does she weigh?" I told him.  He muttered something very grudging about being big for her age and tested her for Strep. And what do you know? It was positive!  He acted AMAZED.  "But babies under one don't get Strep!"  I struggled not to shout at him.

And afterwards I thought and thought about this and I figured maybe that Damn Rule  was almost true 50 or 100 years ago, when kids were smaller and less well nourished, but not today.

When I took Grace for her follow-up to be sure the Strep was gone, I saw a different doc in the practice.  "Oh! She had strep? and she is  ...what?  ...9 months old?  Wow! I wouldn't even have tested her! Babies under one don't get Strep, you know...". I indicated Grace with a flourish of my hypermobile wrist: "Exhibit A" I said with heavy irony

I think she missed the irony.

You know, it's funny, I never read the paper about the stunning case of Grace-the-nine-month-old-baby-with-Strep in any of the on-line research I have done over the years. 

Sorry. That irony just keeps coming back.

There are many rules like that in medicine. Rules which rely on arbitrary formulas and measurements without looking at changes in the trends or other factors. -Damn Rules, as I like to call them.  In our example, Grace had a sibling with Strep (which is highly contagious) and had the exact same symptoms, but these factors  were completely ignored in favor of a Damn Rule with no real logic behind it. It wasn't until I went all Mr Spock on the guy and challenged the logic that she was tested (but I am sure many mothers would not have dared to challenge the doctor, which thought scares me). I still don't know how the Streptococcus bacteria knows the weight of the child, BTW  -or why it cares!

There are many examples of Damn Rules in medicine, and I have seen many people refused treatment -i.e. hurt because of these Damn Rules (hello Hippocratic Oath?). 

Some of the Damn Rules I have encountered recently:

• A brain herniation of <5mm is not a Chiari Malformation (regardless of symptoms)
• A Small syrinx does not cause symptoms (said to a blatantly symptomatic person with a small syrinx)
  And my personal favorite:
• He makes eye contact, so he cannot be on the Autistic Spectrum.

In addition to -and conjunction with- Damn Rules, Statistics is another diagnostic tool which has absolutely no bearing on symptoms or circumstance and yet, like Damn Rules, Statistics are often taken into account and indeed used to rule stuff out before symptoms or circumstance are considered.

How many times have I been told that I can't have an illness -say Ehlers-Danlos Syndrome, because it is "rare"?  There seems to be some kind of blinders set up in the medical world, some unwritten Damn Rules that go along with Statistics. I think they read something like this:

• "Rare" is actually another word for "mythical" or "non-existent"
• Even if it exists, I, Dr. OfSickMother cannot possibly have a patient with a rare disease in my care because:

• Nothing interesting ever happens to me
• It is too scary a prospect for me to handle

The problems with this thinking -with using Statistics as a diagnostic tool at all; is that it becomes self-perpetuating. So-called "rare" disease and conditions remain undiagnosed or labeled psychosomatic because they are "rare". This causes the incidence rate for psychosomatic illness to rise in the Statistics because so many people with "rare" illnesses end up in that bin. With the rise of these (usually unqualified) psychological diagnoses in the statistics, the relative incidence of real "rare" diseases fall...  Rinse and repeat.

It's enough to make me sick. 

Oops. Too late!

Comments

[Sue]

Yes, you are so right. I think that we are the very first generation to question the authority or knowledge of doctors. They are not the god like beings of my mother's generation.

[Lisa Moon]

Sorry for the late comments... I'm just a "wee" bit behind in my readings...

Anyway, UGH! And I agree with Sue; we're the first generation to question the Almighty Doctor/God types, the first to have (gasp!) knowledge and the first to maybe have even heard of things which said Doctors/Gods have not!

I give you another example: I have CRPS. I have been told this by 3 different specialists, but my own GP first suggested it as a possibility - she'd had wrist surgery and beforehand, the surgeon explained it was possible for it to occur, but it would not be the surgery's failing...

Anyway, despite THREE expert, specialist opinions, workers' comp has decided (they don't have the diagnoses yet, but when I verbally informed the case manager, she said but the doc THEY would send me to is THE expert on our island; read= he's the one WE pay to say you DON'T have this).

See, I'm "lucky" and/or do not have some of the extreme-looking, objective signs to PROVE I have this. I have, however, undergone every kind of test to rule everything else out AND seen 3 specialists who deal with this syndrome and felt confident enough to diagnose me.

The point? Likely this 'independent' doctor will 'examine' me (likely look at each leg, feel for temperature differences with his HAND, and not see it purple/black and decide I do NOT have this disoder, period). Why? Because you have to tick boxes in each of several categories for workers' comp to agree that you have this syndrome. Otherwise, you don't.

Oh, don't worry; I'll fight it. Like everything else.

But now back to the Damn Rules you've encountered: while I can't comment on the first from personal experience, though it sounds typically moronic to me!
But I can comment on the ASD and eye-contact thing; o.m.g. I'm so tired of seeing that criteria! I've worked with PLENTY of people who can make eye-contact and so on - who DEFINITELY are 'on the spectrum!' Further, I know a lot of adults who are certain they are, too, but have learned how they're supposed to respond, etc!

[andrea]

Ah yes ... the Absolute Nonsense of diagnostics!

http://qw88nb88.wordpress.com/2007/12/04/absolute-nonsense/

andrea

[Quirky Mom]

My sister, one of your readers, pointed me to your blog, and I LOVE this post. As a statistics nerd, as a female Aspie who may have EDS, and as a mother... This is wonderful! I think I'm going to link this sucker on my blog. Thanks for writing this!!

[Barbara]

Add my compliments on an excellent post.

JoyMama at Elvis Sighthings has you linked this morning.

[JoyMama]

Thanks OSM for this fine, fine post, and to Barbara for doing what I'd forgotten to do and letting you know that I'd used it! :-)

I love the connectedness of the blogosphere...