Update on our little superhero:

We’ve recently had to increase Jackson’s diazoxide dose to the highest level since his diagnosis—12.3mg/kg. For almost two weeks, he has been more unstable than he has been since his discharge in September. Oddly, this instability is only happening in the mornings and early afternoons.

Some days, his blood sugar drops into the 40s, but mostly, he’s in the low 50s/60s. The 60s aren’t too concerning on their own, but the 40s and low 50s—especially when they occur within 45 minutes of eating—are a clear sign that something has changed.

We don’t know why the sudden shift.

If his medication reaches 15mg/kg, we will have no choice but to explore other forms of treatment, which include:

• Injectable medication
• A feeding tube
• And, if all other options are exhausted, a near-total pancreatectomy

We hope it doesn’t come to that—that would be the last thing we want. But if this pattern continues, we may have no choice.

Before making any decisions, Dr. Paul wants Jackson admitted back to Texas Children’s Hospital for closer observation, additional labs, and a controlled diet to test different meal types. If things don’t improve over the weekend, I suspect he will be readmitted next week.

Despite everything, this kid is a trooper. You’d never know by looking at him that he’s so sick—which is terrifying for those watching over him, but I’m grateful that, at such a young age, he still enjoys life so much.

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Genetics Update

On Wednesday, we had our genetics appointment with Dr. Craigen. There is one more test to run—Global MAPS—which will look for biochemical abnormalities in his plasma.

If that test is inconclusive, our final step in the genetic discovery process will be applying to the Undiagnosed Disease Network (UDN). There’s no guarantee we’ll be accepted, but we have a passionate endocrinologist with a strong genetics background advocating for Jackson.

Dr. Nadia Merchant will present his case to the board, pushing not only for him, but for all undiagnosed genetics cases suffering from Hyperinsulinism. I truly believe she wants this as much as we do.

One huge bonus—Baylor College of Medicine is one of only two sequencing cores for the program, meaning there will be no travel expenses for us to participate.

Please pray that Jackson’s case gets approved.

It may not change his prognosis, but it could lead to significant advancements in the Hyperinsulinism world.

We really want this.