Don’t Unleash a Beast

 Individualized Care Means Learning the Person

There is something I wish healthcare and disability systems understood better:

A person’s medical history is not simply a list of things that happened in the past.

It can be evidence of how that person’s body behaves.

My son Alex has an extremely high spinal cord/brainstem injury and a very unusual physiology. Over the years, one pattern has become unmistakable:

When something is artificially changed in Alex’s system, his body can respond disproportionately, paradoxically, and sometimes dramatically while trying to re-regulate.

I once warned a medical team:

“You might unleash a beast you wish you would not have.”

I wasn’t saying, Don’t treat him.

I was saying:

Know who you are treating before you disturb a system that is currently working.

Some examples:

• IV fluids: During a long hospitalization years ago, the team was trying desperately to hydrate and nourish Alex. When IV fluid was started, we could literally watch urine begin pouring into his Foley bag. His body seemed to dump fluid almost as quickly as it was being given.
• Suspected diabetes insipidus: His physician considered whether DI might explain the extraordinary fluid loss and tried treatment. Instead of responding as expected, Alex appeared to dump even more. After the Foley was eventually removed, I was changing him at least every 30 minutes around the clock for a period of time before his body gradually settled.
• Changing the route mattered: His physician, Dr. Karen Lidsky, knew Alex had a Mic-Key button. Rather than continuing to push a strategy his body wasn’t handling well, she tried giving fluid through the Mic-Key very slowly. She learned Alex by watching what his body actually did.
• Nutrition required the same approach: During that hospitalization, conventional attempts to get nutrition into him weren’t going well. TPN produced another poor response. Yet Alex could drink Boost Kids Essentials. Sometimes the solution wasn’t more intervention. It was finding the intervention his body could tolerate.
• The Mic-Key mattered again ten years later: During a 2019 hospitalization at OSU, Alex developed a severe ileus. An NG tube was being considered until everyone remembered: Alex already had access. His Mic-Key. The hospital didn’t have the extension they needed—but I carried one in his supply bag. We connected it to bedside drainage, and his stomach began decompressing through the button.
• Fluid and sodium regulation became critical during that same hospitalization. I warned the team about Alex’s history with IV hydration and unusual fluid responses. His sodium ultimately fell from the 130s to 117, with a directly measured serum osmolality of 242. At the time, Dr. Lidsky—who already knew Alex’s history—raised the possibility of SIADH and noted that pulmonary disease can trigger it.
• Respiratory support isn’t interchangeable either. Alex’s diaphragm pacer is his primary respiratory support; his ventilator provides additional support. Changing one component can change the physiology of the whole system. What looks equivalent on an equipment list isn’t necessarily physiologically equivalent for Alex.
• In 2023, an OSU anesthesia team listened. Before a procedure for kidney stones, they heard the history. They were conservative and observant with medications rather than assuming a routine response. And they kept Alex’s diaphragm pacer on. They preserved as much of his established physiology as they reasonably could while providing the anesthesia he needed.

That last example matters.

Individualization does not mean refusing standard medicine.

It means asking:

What is necessary?
What is already working?
What can we preserve?
What is the smallest effective perturbation?
How has this individual responded to this kind of intervention before?
And what is his body telling us after we make the change?

For medically unusual people, the textbook tells clinicians what usually happens.

Longitudinal history tells them what has happened to this person.

Both matter.

Sometimes the safest clinician isn’t the one who knows the most interventions.

It’s the one willing to intervene thoughtfully, observe carefully, and change course when the individual in front of them does not follow the expected script.

Dr. Lidsky learned that about Alex years ago.

The 2023 anesthesia team listened to what we had learned.

And that is what truly individualized medicine looks like:

Don’t just learn the diagnosis. Learn the person.

Because for a medically complex outlier, history isn’t background information. It is clinical data!