Tag: rare disease awareness

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

When the Protocol Doesn’t Work

Brandi C

When the Protocol Doesn’t Work – Living Outside the Lines in the OMS World

When the Protocol Doesn’t Work – Living Outside the Lines in the OMS World. In the world of Opsoclonus Myoclonus Syndrome (OMS), few names are as respected and recognized as Dr. Michael R. Pranzatelli. His work changed the trajectory of care for children like my son, H.

He devoted his life to researching OMS and founded the National Pediatric Myoclonus Center, where he developed what is now referred to as the Pranzatelli Protocol—a standard in OMS treatment. His contributions shaped how physicians approach this rare and life-altering disorder.

“When you hear hoofbeats, think horses, not zebras.”
But what if… your child is not a zebra either? What if they’re something even rarer—something doctors haven’t seen before?

👨‍⚕️ Dr. Pranzatelli’s Legacy in the OMS World

Dr. Pranzatelli’s approach was both groundbreaking and aggressive—because OMS is a disease that demands swift, bold treatment. His typical protocol included:

  • High-dose corticosteroids (IV methylprednisolone or oral dexamethasone)

  • ACTH (Adrenocorticotropic Hormone) shots

  • IVIG (Intravenous Immunoglobulin) infusions

  • Rituximab, a chemotherapy drug used to suppress the immune response

You can read more about his contributions and legacy on the Child Neurology Society’s memoriam.

A more detailed explanation of OMS treatment protocols is also available in this Rare Disease Network guide.

📊 OMS and the Numbers

While OMS is often linked with neuroblastoma (a rare form of childhood cancer), not every case fits that mold.

H falls into that second group—idiopathic. No tumor, no infection, and no clear trigger. And that made things complicated from the very beginning.

💊 When the Protocol Doesn’t Work

Dr. Pranzatelli’s protocol works well for many children. But not for every child.
And definitely not for my child.

H’s case has always been atypical. He has OMS, but he never followed the textbook pattern. We tried everything:

  • Steroids

  • ACTH shots

  • Monthly IVIG

  • Rituximab

  • Natural supports

  • Nutrition changes

  • Even Plasmapheresis (PLEX)

And still, many of the symptoms persisted—or even worsened.

We weren’t just battling tremors or regressions—we were dealing with rage, insomnia, emotional dysregulation, and a child whose nervous system was constantly on edge.
When standard protocols didn’t work, we were left with a terrifying question:
What now?

🔥 Living in Flare Mode

One of the hardest parts of life with OMS is how easily symptoms can return.
We call them flare-ups, and they are no joke.

A simple cold, a stomach bug, a sleepless night, or even being too hot outside can send H into a full-on neurological flare.

  • Tremors return.

  • He can’t balance.

  • Speech slurs.

  • His behavior shifts.

  • His eyes dart uncontrollably.

  • He can’t process or regulate.

  • He goes from stable to spiraling in a blink.

We live in constant vigilance. We avoid large crowds, prep obsessively for weather changes, and treat every sniffle like it could lead to a storm.

There is no “just a virus” in our house.

🧠 H Is Not the Protocol

I used to believe if we just followed the treatment plan hard enough, long enough, it would all go away.
But H is not a protocol.
He’s a person.
A living, breathing, beautiful mystery.

He may not respond the way “typical” OMS kids do, but he’s still here. Still fighting. Still rewriting what healing can look like.

He’s not a horse.
>He’s not even a zebra.
>He’s an okapi. Rare. Remarkable. Unmistakably his own kind of miracle.

“Before they call I will answer; while they are still speaking I will hear.”
— Isaiah 65:24

💛 Heartbeat Moment

For the families just starting this journey: If the meds don’t work, if your child doesn’t fit the mold, you are not alone.

H’s story is not one-size-fits-all—and neither is yours.

There is no shame in being the exception.
>There is no weakness in needing to try something different.
>There is only strength in staying in the fight.

And as for me?

I will keep fighting for the okapi.

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

8 Years Ago: The Beginning of Change

Brandi C

opsoclonus myoclonus syndrome header 300x97

8 Years Ago: The Beginning of Change

A Journey of Faith, Fear, and Finding God in the Chaos

8 Years Ago Our Lives Changed, our world shifted in a way we never saw coming. Our youngest son had just turned three, and life felt beautifully ordinary—summer evenings at the ballfield, laughter echoing through the house, and a rhythm that felt familiar. But this date became a line in the sand—the moment everything changed.

What followed was a journey of medical mystery, emotional endurance, and soul-deep transformation. It’s a story marked by suffering, but more than that, it’s a story of survival, surrender, and the relentless faithfulness of God.

Some of these moments still feel too tender to fully unpack. Some wounds remain unhealed. But after eight years, I’m ready to begin telling our story—piece by piece—and allow the Lord to begin mending what was shattered.

Life Before OMS: When Normal Was Enough

Before 2017, I had found a manageable rhythm. My anxiety and depression, diagnosed at 19, were ever-present but contained. I had learned how to live around them—how to build a life that worked within my limits.

I could go to Walmart without disassociating. I could sit in a restaurant and actually order a meal. I was active in church, involved in our homeschooling community, and genuinely enjoyed opening our home to others. It wasn’t a perfect life—but it was peaceful.

But in a single moment, peace gave way to panic.

Thrown Into the Unknown: A Mother’s Relentless Pursuit

When our son became sick, everything changed. My husband had to stay behind with our six other children. That left me—terrified, inexperienced, and already emotionally fragile—to carry the weight of a life-or-death journey.

I had to become the advocate, the nurse, the social worker, the travel coordinator, the warrior. I made the calls, booked the appointments, and crisscrossed states like Kentucky, Ohio, Pennsylvania, Florida, and Tennessee searching for answers.

There was no time to pray about decisions. There was no margin to grieve. I had to bury my fear and keep marching forward, making decisions most parents should never have to face—alone.

Life After OMS: From Warrior to Wounded

Our intense medical travels lasted from 2017 through 2021. After our son’s final plasmapheresis treatment, I stopped traveling long distances altogether. Then, slowly, I stopped leaving the house unless absolutely necessary.

Even things like going out for dinner became mountains I couldn’t climb. Anxiety stole parts of me I didn’t even know could be taken.

I can still work—that’s a space I can manage. I can still attend church—that’s my place of peace. But beyond that? Life feels small now. Controlled. Contained. Safe.

One night, my parents wanted Culver’s. My mom was recovering from surgery, and my dad rarely goes out. I offered to pick it up—but had to type the order into my phone so I wouldn’t forget. I had a panic attack in the car, sobbing as I called my husband. He stayed on the phone the entire time, talking me through a fast-food drive-thru.

That’s where I’m at. And it’s okay to name it.

The Weight of Trauma: Why I’m Still Healing

Years of emergency decisions have left deep emotional bruises. I lived in survival mode so long that I forgot how to live any other way.

“Do you consent to high-dose steroids and IVIG?”

“We need to prepare for the worst.”

“Sign here. And here. And here.”

“Your son needs chemo.”

“You need therapy too. Good luck finding time.”

Every one of those decisions was made in real time, without room to breathe or process. I pushed my own needs aside to save my child’s life. And now? I’m trying to find the pieces of me I left behind in hospital rooms.

A Complex Kid, A Faithful God

Our son is still medically fragile. Stress wreaks havoc on his little body. But he’s here. He’s mischievous, wildly imaginative, and brave in a way I can’t fully describe. Every year on his birthday, I send updated photos to the neurologists who doubted his survival. Their stunned responses always fill me with awe—and gratitude.

I am so thankful for the people who stood by us—those who called, prayed, donated, or simply saw us. My husband and children carried me when I couldn’t carry myself. But in those hospital rooms, it was mostly just me and my son… and God.

And let me be clear: God never left.

Even in the confusion. Even when healing didn’t look the way we wanted it to. Even in the silence. He was there.

Walking Into Healing: One Step at a Time

This story doesn’t have a clean ending yet. There are still panic attacks, still days I cancel plans, still fears I can’t always fight off. But I’m learning to hand my fear back to God—to trust that He’s still writing this story.

I’m ready to start healing. To breathe again. To trust again. Not just in doctors, or therapy, or time—but in the God who never once turned His face away from me.

If you’re walking through something hard, I hope our story reminds you: you are not alone. There is no valley too deep for God’s presence. No diagnosis, no fear, no trauma that disqualifies you from His love or your purpose.

Let’s Keep the Conversation Going

This month, I’ll continue sharing parts of our journey with Opsoclonus Myoclonus Syndrome (OMS)—the diagnosis that changed everything. If you have questions, I welcome them. If you feel led to comment, please do so with kindness.

Thank you for being here—for witnessing our story and holding space for it.

There is beauty on the other side of brokenness. And I believe God is still making all things new—even here.

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

New Video from NORD

Brandi C

New Video from NORD

New Video from NORD

Here is a brand New Video from NORD. For those who have no clue what NORD is…it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By “run of the mill,” I mean those diagnosed frequently.

Awareness

This site is all of the hardcore, rare, little to no treatment type of condition. I am very excited that Mike Michaelis and his team have worked hard on the OMS Life Foundation.

Who DOES NOT buy things from Amazon? If you do, you can go to Amazon Smile and make all your purchases there. It is the same as Amazon, only this time, a percentage of what you buy goes to a charitable donation.

Amazon Smile does not cost you a dime:

  1. Choose your charitable organization and type in “OMSLife Foundation” (in Cypress, TX).
  2. Select that option.
  3. Anything you spend will help the foundation raise money and increase awareness of H’s condition.

NORD Rare Disease Video Library

“The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals, and the public. NORD works with medical experts and patient organizations to develop the videos, which are made possible by individual donations, educational grants, and corporate sponsorship. NORD is solely responsible for the content.”

All About Opsoclonus Myoclonus Syndrome

All About OMS

If you click on the above link, it will take you to an awesome video that explains OMS very simply. All the things in my head have formed into a video. I am pleased as punch for them to highlight this condition.

OMS is not a “money maker” because it is so rare. That means funding and research are not done because there is nothing for big pharmaceutical companies to make. These kids are like human experiments. It is all trial and error.

Let’s bring light and awareness to this condition and help kids get a PROPER diagnosis and begin proper treatment. I don’t want another family to deal with everything H has.