Safety Fast for Hyperinsulinism
We arrived at Texas Children’s Hospital on Sunday at 7 PM for Jackson’s first Safety Fast since his discharge in September. We knew it would be tough and prepared as best we could. We didn’t think he would last longer than eight hours, but we needed to know.
Some parents of HI kids choose to skip the fast, and I understand why—withholding food to force a hypoglycemic state sounds barbaric. But we felt it was necessary to ensure his diazoxide dose was high enough to sustain him and to check for any changes in his lab results.
The fast began at 8:30 PM. He stayed on schedule with his diazoxide and was allowed water. His starting blood sugar was 81. We checked every three hours until he dropped below 70, then every hour until 55. Our goal was to see how low he would go before showing symptoms, then administer glucagon, complete a glucagon challenge, and run labs.
The Results: A Shock to Everyone
Jackson’s blood sugar remained above 70 for 10 hours—far longer than expected. But when it dropped, it plummeted—going from 70 to below 50 in just two hours. He hovered between 44–32 for hours.
He never showed typical signs of hypoglycemia—no sweating, clamminess, or shaking. Since he can’t communicate, we don’t know what he felt, but he was cranky, asking for milk, and visibly miserable. His CGM alarm kept going off, and we learned that when blood sugar drops below 40, the app stops showing numbers and just reads LOW.
After three hours, his face lost color, and we stopped the fast, took labs, and administered glucagon. Despite everything, he remained alert, playing and even laughing between crying. At that point, he had fasted for 15 hours.
Unexpected Findings
In past glucagon challenges, Jackson’s blood sugar always rose as expected. Not this time.
- Starting glucose: 34
- 15 minutes: 44
- 30 minutes: 38
- 60 minutes: 32
Instead of rising, his glucose dropped. He was immediately given D10 (dextrose) through his IV and allowed to eat. His sugar quickly spiked to 210, and after stopping the dextrose, he stabilized between 85–120.
Then came the biggest shock—when Dr. Paul reviewed the results, he said something we never expected to hear:
Jackson was making ketones.
For the first time.
HI kids don’t make ketones—that’s part of the disease. But Jackson did.
Even more surprising, the glucagon response showed that his liver was distributing glycogen appropriately—meaning the glucagon “failure” wasn’t due to a liver issue.
These results suggest that Jackson may have Transient Hyperinsulinism—something we never thought possible at this point.
Most cases of transient HI resolve within the first 30 days of life—some within the first year. Jackson was diagnosed at four months old and just celebrated his first birthday, so the odds were not in our favor.
But now?
Dr. Paul believes there’s reason to have HI HOPES.
Testing the Theory: Three Options
- Let him outgrow his dose until he’s below 4mg/kg
- Slowly wean him down
- Admit him for a Cure Fast
We’ve chosen to admit him. It’s not that we can’t do this at home, but we want the added security of a team who knows this disease inside and out. If something happens, we want an army behind us.
So in two weeks, we’re going back.
A Mother’s Reality Check
Yesterday, Dr. Paul looked at me and said, “You know, if he outgrows this, you’re going to go through withdrawals.”
He might be right.
Since August, my brain has been running 100 mph—researching, advocating, managing appointments, fighting insurance companies, running a Facebook page, a website, planning a fundraiser, constantly checking my phone for his CGM readings.
If he no longer has HI, we’ll suddenly be thrown into “normal” life—something I’ve never considered a possibility.
But I’d much rather have a calm life with a healthy kid than a hectic one with a sick kid.
None of this is guaranteed. But there’s hope.
This morning, I let Jackson sleep in before daycare. Yesterday was rough on him, and he needed the rest. When I walked into his room, he jumped up to greet me—and I was overcome with emotion.
No matter what the Cure Fast shows next week, I will never stop fighting for him.
This kid is amazing.
He is strong.
He is a fighter.
He is sunshine and rainbows in every storm we go through.
And he deserves a life free of illness.
I want this for him so badly.
#wehaveHIhopes
We have HI hopes 