Two Types of “Extraordinary”

Well, with shoes on, K is 2'10".
With shoes on, K is 2’10”.

When I think extraordinary, I think either very rare or not yet understood. Often times, the difference between the two types is blurred because we do not have enough information about the rare event to see a pattern or cause. I think of our youngest daughter who was recently measured in the 0.05 percentile height-wise for children her age. If this doesn’t mean anything to you, picture 10,000 children getting in line from shortest on the left to tallest on the right. Of the 10,000 children, K would only have 4 children further to the left of her. Her height is very rare for her age, but is it unexplained? The line is blurred here as she was born missing a chromosome and very early at 23.5 weeks. The doctors do not know the impact of either well enough to attribute them to be the cause of her height.

It may sound odd, but I do not wish my children to be extraordinary in any medical sense. I think the two most terrifying things a patient can hear from a doctor are “you have a fatal condition” and anything prefaced by “This is interesting…” As a patient, I want to hear the doctor say, “You present like another case, and I would like to try what has worked for others to see if it can help you too.”

Of course this bring me to an event which excites me at the end of this week. I will have the honor of participating at a meeting for the American Board of Internal Medicine which has been dealing a lot with continuing education requirements for doctors. I know the dread of continuing education for those of us who think we are done with formal education. I hate doing the continuing education required for me to manage and the separate course work to remain a foster parent of medically fragile children. However, when I am most tired of finding time I don’t have for continuing education, I think how fast the world is changing.

A has come further than we had ever hoped.
A has come further than we had ever hoped.

Ten years ago, the literature about the long term prospects of a kid who has undergone a fontan procedure for their heart said they would need a heart transplant in the next thirty years. Now, patients who have had the fontan procedure are living much longer without needing another heart. How long? Well, we will just have to keep reading into the future as that research is ongoing.

Then I think about my own MS twenty to twenty-five years ago, I would have been given steroids to treat flares with little hope of reducing the number of incidents. In the 1990’s, MS patients began to get some disease modifying drugs, but they not the most powerful treatments on the market today. They reduce flares some, but their impact on disease symptom progression is not statistically significant. Recently, there has been a bigger push to look at symptom progression as a better measure than number of flares, and on this basis the newer drugs fare better. The oral options are more effective than the older injectable treatments, and Tysabri still has the best results as measured by symptom progression and numbers of flares. However, the drug was pulled off the market when a few patients died from brain infections. It was put back on the market when patients pointed out they were willing to take the minor risk for the possible benefits of the treatment plan. I have been lucky enough to have neurologists who stay current on the research which has allowed me to stay on the most effective treatments. Their education saved me the dreaded “interesting” designation. Their education allowed me options many patients I meet have never been presented. Still, the history book is not closed on either my MS or MS research.  Even last week, the recommended treatment course as defined by NICE (the  National Institute for Health and Care Excellence) for newly diagnosed patients changed:

Recently a pharmaceutical company declined to pursue a drug (Cladribine) which showed potential to wipe out MS in patients because of an “increased” cancer risk. Increased is in quotes because patients in the trial who took the drug had more cancer in their group than the control group which had none. This sample anomaly in the control group killed that drug’s chance to make it to market as an MS treatment. Still, maybe the trial will give hope to a desperate patient for whom nothing has worked. Maybe it will give inspiration for further research into another drug with similar properties. Maybe the positive MS results will seem extraordinary enough to serve as a catalyst for us to learn more about how MS works and can be stopped.  I am not clear if it was just the oral version that was rejected and not the injectable.  For a write-up on Cladribine’s rejection, check out (

On a personal note, I turned 39 this week, and my favorite part of my birthday was going for a run as O and A rode their bikes. Being able to play “Zombie Escape” for 3 miles seemed extraordinary. It felt good to think how far we have all come; me with my MS, A with her heart and digestive system issues, and O with his premie lungs and brain injury. It’s a memory I will cherish.