When the Protocol Doesn’t Work
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. This is 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.
-
About 50% of OMS cases are associated with neuroblastoma.
-
The remaining 50% are idiopathic, meaning no clear cause is found.
(Source: Pediatric Neurology Journal)
H falls into that second group, which is 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.
You can read more from our Opsoclonus Myoclonus Syndrome journey here.
Helpful Resource:
If you are walking through medical parenting, rare disease, grief, faith, or hard seasons, I keep a list of books and resources I have personally found meaningful here: Helpful Resources I Love.
Disclosure: This page may contain Amazon affiliate links. As an Amazon Associate, I earn from qualifying purchases at no additional cost to you.
