glucometer

Failed Cure Fast and New Challenges

/ Renee J / Leave a comment

Jackson didn’t pass the cure fast. He became unstable quickly, and I cried—a lot. I was so desperate for relief. But if there’s a silver lining, it’s that he isn’t worse. We are still managing his disease as we always have. Hyperinsulinism continues to be our reality.

Due to some scheduling delays, we got a late start. We officially began the study on Saturday afternoon, and within 24 hours, he became unstable. He started requiring feeds every two hours just to keep his blood sugar above 70. About 20 hours off diazoxide, his blood sugar was headed into the 40s—a clear sign that he is still severely hypoglycemic.

We administered double the glucagon we had in the past to bring his sugar back up. We also ran critical labs again. The results, once more, confirmed congenital hyperinsulinism—ketones were at 0.10, and insulin levels were high. With that, we stopped the study, restarted his medication, and spent the next few days rebuilding it in his system to get him stable again.

Finding Strength in Unexpected Places

During this visit, we were blessed to be followed by Dr. Nadia Merchant, who consulted with Dr. Paul along the way.

Dr. Merchant is an incredible doctor, originally pursuing a fellowship in genetics before shifting to endocrinology—two of the most complex fields of medicine. She’s also one of the most intelligent women I’ve ever met.

And she knows a thing or two about overcoming obstacles. Dr. Merchant is a little person, standing at 3’6” tall. She told us how people always tried to put her in a box, to limit her. But her parents never let that happen—they pushed her. She wasn’t allowed to use her genetic condition as a crutch.

She sat with us for nearly an hour. She knew how disappointed we were, but she reassured us—there is still so much to be thankful for. And we agree.

  • Jackson has medication that works—and works well for him.
  • We live in the U.S., with access to some of the best doctors in the world.
  • We live in Houston, home to the Texas Medical Center and a hospital experienced in managing HI.
  • We have doctors who truly care about Jackson—not just as a patient, but as a person.

We have a plan moving forward—more tests, more programs, more opportunities. Dr. Merchant isn’t even our main doctor, but she committed to seeing us through. She admitted it won’t always be easy, but with such a strong support system, she believes Jackson’s potential is limitless.

It’s not the answer we wanted. But we’re committed to making the best of our situation.

New Challenges: The Battle Beyond HI

Unfortunately, HI isn’t the only thing we’ve had to worry about.

Jackson’s lungs continued to deteriorate. Nine hospitalizations, each requiring high-flow oxygen just to get him through various viruses.

We cycled through diagnoses:

Reactive Airway Disease
Asthma
And then, a ton of possibilities that didn’t fit.

Inhaled steroids? No improvement.
Breathing normally? Never.

After countless appointments, a triple endoscopy, a swallow study, and permanent lung damage, we finally learned the truth:

He has silent aspiration.

He has been aspirating his whole life, and we never knew.

The cause?

  • A laryngeal cleft
  • Vocal cords slightly too short, preventing them from closing properly

Last week, he had two procedures, and we’re praying for improvement.

This road is long. It’s exhausting. It’s heartbreaking. But it’s also filled with hope. Because no matter how many times we fall, we keep getting back up.

#WeHaveHIHopes

Sugar Bugs

/ Renee J / 2 Comments

Lancets and Test Strips

They say a picture is worth a thousand words, but looking at this picture, I could tell you thousands.

These lancets and test strips are from our sharps container at home—all from glucose checks—and this isn’t even half of what we’ve used over the last few months.

To me, these are:

  • Hundreds of pokes on the sweetest baby toes you’ve ever seen.
  • Scared moments when his sugar dropped too low.
  • Late nights and early mornings, woken by his crying.
  • CGM calibrations, testing how new foods affected his sugar.
  • Moments of panic when he was throwing up, and we didn’t know how long we had before he’d become hypo—when we were checking every 30 minutes or less, all while rushing through Houston traffic to the Texas Medical Center.

But mostly—thankfully—these were our reassurance that he was okay.

This is what our lives have revolved around for the last nine months.

Checking for “Sugar Bugs”

Somewhere along the way, we started calling it “checking for Sugar Bugs.”

No idea why—one of us said it, and it stuck.

“How many Sugar Bugs are we going to find? Let’s catch lots and lots of them! Yay! We found 92!”

Seems a little silly, but we’re trying to make it fun, to make it positive.

He doesn’t cry anymore when the lancet pierces his skin.
He doesn’t wake up when we poke him at night.
His big toes are so callused now that sometimes, getting a single drop of blood is a challenge.

I remember when we first started this journey—his tiny toes red with bruises, worn from too many pokes.wehavehihopes toes

A Cure Fast & A Mother’s Hope

Now, here we are—just days away from the start of our Cure Fast at Texas Children’s.

I am so anxious.

We’ve slowly reduced his Diazoxide intake from 9.54mg/kg to 8.18mg/kg.

So far, he’s doing really well. A few numbers near 70, but for the most part, he’s hanging around 120.

I pray that’s a good sign.

I’m scared to be disappointed because no matter how many times I tell myself “Don’t get your hopes up”—they’re up.

After all, I’m a mom with HI Hopes.

It’s who I am.

I want this so badly for him.
For us.

The next two weeks will be a rollercoaster of emotions, but I want to know.
It’s the not knowing that makes me feel crazy.

If he has to live with HI longer—or even for the rest of his life—we’re going to manage.
I know that.

But I pray he doesn’t have to.

Dreaming of a Life Without HI

One day, I hope that when I look at that pile of lancets and test strips, the words that come to mind are in past tense.

That they become things we used to have to do.

That they turn into distant memories, replaced by new ones in a life free of Hyperinsulinism.

How sweet that life could be.

I don’t know if that’s what’s in store for us.

But I’m holding that dream close to my heart—and never letting go.

Life Can Sure be Sweet

/ Renee J / Leave a comment

hihopes picture.pngMost days, our lives aren’t easy.

Five hospitalizations in the last few months have left us stressed, scared, and overwhelmed. But despite everything, we are stopping to enjoy the sweetness in our lives—because Jackson is about to turn one!

A Year of Challenges & Growth

In the last year, we have:

  • Learned so much and met some of the most amazing people.
  • Seen family and friends rally around us in ways we never expected.
  • Learned to advocate—for Jackson, for ourselves, and for others.
  • Watched our older child grow and mature, fighting for her little brother every step of the way.
  • Seen our “Sugar Baby” become a hero right before our eyes.

No, it’s not always easy. But life can sure be sweet.

Stability & The Next Big Test

Lately, Jackson has been mostly stable.

We still have scares—times when his sugar drops without warning, and we fight to bring it back up. But thankfully, that has become the exception rather than the rule.

In the next few weeks, he’ll be readmitted for his first Safety Fast since diagnosis.

The goal? To fast him on Diazoxide alone and see how long he can go without eating.

This isn’t a foolproof method, but it’s one of the only ways to gauge:

  • Is he getting better?
  • Is he getting worse?
  • Does he need an increase in medication?
  • How long do we have if he can’t eat before things take a dangerous turn?

So many things affect blood sugar—illness, pain, outside temperature, energy levels—so how he responds in the hospital may not fully reflect real life.

But it will give us a starting point.

And for now, we are holding onto hope and the sweetness of today.

CGM – APPROVED!

/ Renee J / Leave a comment

After a long fight, the CGM was finally approved, and we love it!

We had to go through the State of Texas Independent Review Organization (IRO) for a final appeal, but UHC’s decision was overturned!

The reviewing doctor stated:

This young infant was diagnosed around four months of age with altered mental status and seizures. There was concern that he had been hypoglycemic and possibly experiencing seizures for some time. He has since stabilized on diazoxide. However, despite diligent blood glucose monitoring every three hours, frequent feedings, and conscientious medication administration, he continues to have severe hypoglycemia spells. He is unable to communicate symptoms with his parents, increasing the likelihood of severe hypoglycemia. This in turn increases his risk of brain damage and intellectual disability.

Use of a Dexcom G5 continuous glucose monitoring system would allow for near-continuous glucose monitoring, enabling the family to intervene as needed, preventing severe hypoglycemia and reducing potential risk for brain damage. This device is medically necessary and appropriate for this baby boy.

This battle involved hours on hold, countless phone calls, standing over fax machines, and more than a few tears on my end.

I’ll never understand why we had to fight so hard, but in the end, the reviewing doctor saw the severity of the situation and did the right thing.

Getting Used to the CGM

Right now, we have the CGM placed on his thigh. The first insertion was rough—he cried a lot—but we’re getting the hang of it.

He uses an iPhone as a transmitter, and as long as he’s on WiFi (like at daycare), I can check his sugar every five minutes through an app on my phone.

The system alerts us when his sugar is:
Dropping too fast
Under 70
Under 55

This device is absolutely worth the fight.

wehavehihopes cgm.png

CGM Denied… Again

/ Renee J / Leave a comment

The Dexcom was denied once again after an urgent appeal to United Healthcare.

Ugh. This is frustrating.

The letter stated that I was out of appeals and that my next step would be to involve a third party review.

The reason?

The FDA has only approved the CGM for Type 1 Diabetes.

I’m just one mom—there’s no way I can get the FDA to help us, right?

I understand that insurance companies care about the bottom line. I really do.

But this morning, when Jackson’s sugar dropped into the 60s without warning, we would have known he was declining if he had this machine.

To the doctor making this decision:

To you, he may just be another claim.

To me, he is my whole world.

Please do the right thing.

Insurance Denies – CGM

/ Renee J / Leave a comment

Jackson’s endocrinologist requested a Dexcom G5 Continuous Glucose Monitor, warning us that insurance would likely deny it.

I seriously thought, there’s no way. How could they deny a device that could literally save his life?

Since Jackson’s birth, I’ve spoken to our insurance company many times—and honestly, they’ve always been pleasant to deal with. No issues at all.

So when they denied the claim—even after prior authorization—I was shocked.

Yes, I had been warned, but they had been so easy to work with before. I expected more from them.

The Call

I decided to call and talk to them.

Surely, if they understood Hyperinsulinism, they wouldn’t deny it, right?

Wrong.

Their reason?

“BECAUSE PATIENT DOES NOT HAVE TYPE 1 DIABETES, THIS DEVICE IS NOT MEDICALLY NECESSARY.”

Deep breaths.

So I calmly explained:
✔ He doesn’t have diabetes but has a disease that affects his glucose levels.
✔ He is severely hypoglycemic.
✔ If his blood sugar drops and I don’t catch it, he could suffer brain damage or worse.
✔ He’s six months old—he can’t tell me if he feels unwell. This machine would communicate for him.
✔ This machine isn’t just for diabetics—it’s for anyone who needs 24/7 blood glucose monitoring.

Still not enough justification.

The Appeal

In desperation, I submitted an appeal, explaining everything I knew about HI and begging them to reconsider.

Julie from Congenital Hyperinsulinism International also wrote a letter, urging them to look at the facts.

The truth is, if Jackson suffers brain damage, the long-term medical costs will far exceed the cost of this device.

It’s the right thing to do—and it would save them money in the long run.

They said they’d make a determination in 30 days.

So… we wait.