When you get what you ask for

Above: Daniel and I about to leave for his follow up cardiologist appointment (pre-beta-blocker cold-turkey stop)

I wanted a pediatric specialty team for my adult son, Daniel because his health issues are from birth and he is the size of an 11 year old, tiny and childlike.

I wanted a team with the curiosity to look at his rare genetic deletions and ask why standard nutrition formula he is on forces his heart into a dangerous adrenaline storm, why standard IV fluids make him worse, and why only diluted Pedialyte breaks the loop, normalizing his heart rate. He needs a custom metabolic diet, not a standard playbook.

Instead, we just got a local pediatric cardiologist who seems unconcerned with tachycardia-induced cardiomyopathy telling me to figure out why his formula causes this and no “team looking for answers”… a team of one - ME.

During a recent week long hospital stay at Stanford 5/16-23/2026, providers poured formula into Daniel’s system, leaving his heart rate skyrocketing unmedicated instead of finding a formula and ingredients he can tolerate and connecting us with metabolic genetics. The 72-hour adrenaline-storm-induced acute cardiomyopathy, dropping his heart function (LVEF) down to 41%. Over the last month at home, I have managed to partially reverse that heart failure. I did it through sheer, 24-hour diligence - keeping him calm, mostly bed-bound, and meticulously adjusting his fluids when his heart rate gets too high, giving 1/4 dose of the beta blocker he went home on, to be given “as needed.”

When we walked into the cardiologist clinic 3 days ago for his follow up appointment, the doctor saw Daniel sitting passively in his wheelchair with a beautiful resting heart rate of 88 and perfect blood pressure. He declared him “cured” and ordered him off his beta-blockers cold turkey. He didn't seem concerned if Daniel's heart rate was resting at 140 or even 160, even though that's not his normal and even though it caused tachycardia- induced my cardiomyopathy a month earlier which I worked hard to reverse.

Daniel looked normal only because I am exhausting myself around the clock. I am acting as his external life-support system. He could have walked into the appointment but the long walk would have put his heart rate at 110+ for the duration of the appointment.

Within 48 hours of stopping the medication cold turkey, the beta-blocker rebound hit. His resting heart rate shot to 130, his blood pressure spiked to 130/100+, and his gut failed into acute diarrhea.

Yet, the system tells me “they aren’t worried.” They don’t see his energy metabolism bottleneck. They don’t understand that my micro-dosing of a quarter-tablet of a beta-blocker as-needed is a rescue shield to keep adult heart muscle from failing, keep the diarrhea at bay and preventing ATP depletion leading to heart failure.

I manage his heart the way a devoted parent manages a brittle diabetic.

A diabetic checks the monitor, skips the donut, and adjusts their insulin to keep the numbers perfect. But modern medicine doesn’t know what to do with a mother who maps the real-time data of a non-verbal adult child. They only want to treat patients whose numbers are constantly, visibly failing in front of them.

They want me to stop watching the monitors, but my 24-hour vigilance is the only thing keeping my son alive and helping me to understand what is causing his tachycardia and what I can do to prevent him from spiraling.

On the way home heart rate 125-140

I'm at a dangerous point right now, no good choices in front of me. Do I let him get exercise and let his heart rate skyrocket, diarrhea ensue then go to the emergency room where they will put him back on the med so I can give it to him as needed? Do I keep Daniel so sedentary he rots in bed.

I want to seek a natural doctor to help manage him with supplements and herbs.

I ordered Chris Masterjohn's Mitome Test but it will take weeks to get the results that might help him. I know so much about what is wrong with Daniel, his genetics, his intolerances, but applying it isn't easy nor straight forward. Metabolic defects rarely are. Chris would know.

I might make a post about Daniel's genetic bottlenecks.

A lot of us are going through what Daniel is on a smaller scale. Masterjohn lays it out, incase you haven't heard of him I recommend watching some of his videos if you have a health problem that you cannot find the cause of - or the treatment for.

I wrote the poems below.

For clarity I have 2 phones to support the 2 apps required for his 2 wearable ecg heart monitors so that when the battery goes dead on one I can swap it out for the other and I always have a spare. I want a spare of anything that I depend upon. I don't run them both at the same time. The poems wording is meant to highlight what I'm going through with Daniel right now, how hard I'm trying. The second poem is about bucket lists and how grateful I am for each day we have together.

The Ghost in the Chart

In the quiet of the room, two phones glow bright,
Tracking a pulse through the depth of the night.
Two cuffs, two screens, two monitors at hand,
A map of a body few else understand.
I am no perfect saint, no angel of grace,
Just a mother awake in this shadowed space,
Peeking at numbers while the rest of the world sleeps,
Guarding the data that his blueprint keeps.

The charts say forty-one percent, a heart muscle strained,
A localized weakness where the speed has remained.
But the doctors see eighty-eight, steady and cool,
And say he is fine by the standard old rule.
They see a ghost, a false, easy calm,
Unaware that the peace is the work of my palm
Switching to water when the numbers run high,
Propping him up as the dawn fills the sky,
Catching the cortisol spike at the five AM mark,
Before the adrenaline spirals the dark.

For regular people, the pill runs by the clock,
Twice every day like a key in a lock.
But I watch the screens, giving less when I can,
Managing gaps for a miniature man.
A quarter of a tablet to soften the blow,
To keep him from soaring where he shouldn’t go.
Because left on his own, the high rhythm brings
A dangerous joy where he laughs and he bangs,
Chasing the rush that the adrenaline leaves,
While his hidden code struggles, and his chest deeply heaves.

They tell me to walk him, to exercise more,
To push his adult frame away from the floor.
But movement means one hundred and seventy beats,
A compressed chest cavity struggling in sheets,
And a wave of distress that tears through his gut,
A door that the standard pills try to keep shut.
Give him the anti-diarrheal, and the pattern gets worse
Refractory spikes like a circular curse.
What other parent has tracked how it loops?
How the blood pressure rises before the gut droops?

They want me to look with a blinder-bound eye,
To ignore the deletions and just pass them by.
But the genes are right there, written into his frame,
Defying the logic of the common case name.
So I wait for the test kits to arrive in the mail,
Looking for nutrients where formulas fail,
Adding the oil, trying every small bypass,
To feed a starved brain through a broken-down glass.

I am not looking to fight or to boast,
I just want a doctor who sees more than a ghost.
Daniel is different; his symptoms defy
The average textbooks they measure him by.
I hold up the structure so it doesn’t give way,
Using tools, using tech, through the night and the day.
It is an strange way to live, outside of the line,
Driven by a love that no chart can define.

____________________

The walls of this room cannot hold where we’ll go,

Beyond the green screens and the monitor’s glow.
We have sat in the quiet and counted the beats,
But the world is still waiting outside of these sheets.
So we’ll write down a list on a clean, open page
A map of adventures for his adult age.
No more watching the clock, no more tracking the fear,
Just reaching for moments while Daniel is here.

I want him to feel the cold rush of the breeze
Through a forest of towering redwood trees,
To sit in his chair where the ocean tide breaks,
And watch how the sunlight dips into the lakes.
We will chase down the vacations we put on a shelf,
For a man who is uniquely, completely himself.
Every road we can travel, every path we can clear,
We will pack them with laughter and hold them all dear.

Let them call me too difficult, stubborn, or loud,
I will carry his hand and be fiercely proud.
They can stay in their offices, missing the sign,
While I treasure each morning that Daniel is mine.
For life isn’t measured by a clinical chart,
Or the cautious calculations of a doctor’s part
It is found in the trials, the triumphs, the tears,
And the courage it takes to out-love all our fears.

We will cross off each wonder, one day at a time,
Finding fuel for his spirit and mountains to climb.
Grateful for every sweet second we make,
For the beautiful, boundless journey we take