Tag: pediatric neurology

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Long Road to a Name

Brandi C

The Long Road to a Name

There’s something uniquely painful about being told a hundred different things, only to be left holding nothing solid. H’s journey has been filled with more questions than answers—and more misdiagnoses than I care to count. This is a small snippet of what it took to finally land on something we could name.

But even more than the name…

This is about what we know for sure.

June 6, 2017 — Life Changed While He Slept

Hospital 1

  • Bloodwork and urine tests

  • Diagnosis 1: Strep

  • Sent home with antibiotics and the promise he’d be better in 10 days

June 7, 2017

Hospital 2

  • MRI, bloodwork, urine

  • Diagnosis 2: Acute Cerebellitis Ataxia

  • Viral, temporary, “he’ll be fine in two weeks”

June 8, 2017

Hospital 3

  • MRI, X-rays, ultrasounds, lumbar puncture, EEG, more labs

  • No diagnosis

  • Vague mention of a degenerative neurological disorder

  • No plan. No idea what to do next

June 14, 2017

Diagnosis 3: Opsoclonus Myoclonus Syndrome (OMS)

  • Began high-dose steroids and first dose of IVIG

  • One week later: chemo

  • Two weeks after that: more chemo

  • Monthly IVIG through April 2018

  • ACTH injections (Dec 28, 2017–Feb 27, 2018)

April 2018

Hospital 4

  • Confirming OMS diagnosis, fearful of degenerative neurological process

  • Repeated nearly all tests: MRI, X-rays, LP, ultrasound

Final Dx from Hospital 4: OMS

May 2018

Back to Hospital 3

  • New idea: Maybe not OMS, but Spinocerebellar Ataxia (SCA)

  • Degenerative. Genetic. No cure. No treatment.

  • He still wasn’t walking

June 2018 — A New Day

  • Unconventional treatment

  • Five days later:
    He. Was. Walking.
    On the beach.

“Now faith is confidence in what we hope for and assurance about what we do not see.”
— Hebrews 11:1

July 2018

Diagnosis 4:

February 2019 — Hospital 5 (UPMC Pittsburgh)

  • ATLD1 diagnosis debunked

  • Returned to third diagnosis: Opsoclonus Myoclonus Syndrome

  • Restarted treatment

And then… blah blah blah.

Because honestly? It’s been years of back and forth. Years of new guesses, new scans, new terms, new fears. So many months, so many procedures, so much medicine, and so much exhaustion—for him, for us.

What I Know for Sure

  1. He does not have Friedrich’s Ataxia.

  2. He does not have a mutation on MRE11A (ATLD1).

  3. I finally got a straight answer from Dr. Thakkar in Pittsburgh.

  4. We have good days and bad days.

  5. I am an expert on my son, and I will not waver just to satisfy a doctor’s pride.

  6. He is cute.

  7. Best. Smile. Ever.

  8. He is also a turd.

  9. I will not compromise my faith.

  10. God. Is. Bigger.

“He is before all things, and in Him all things hold together.”
— Colossians 1:17

I’m tired of man telling me what this is or isn’t when they don’t even know. These doctors—most of them—have never even seen this. They are learning on him. And we’re the ones who carry the cost of that learning.

But I am not bitter.

I am anchored.

“But the Lord stood with me and gave me strength…”
— 2 Timothy 4:17a

Because we don’t walk alone. We never have.

💛 Heartbeat Moment

This isn’t just about a diagnosis. It’s about a child whose life changed in a moment, and a family who refused to let go of faith. Standing on the truth, even when no one else sees it yet. It’s about choosing joy—again and again—and declaring that our God is still good.

H is more than a list of symptoms.

He’s more than a diagnosis.

He is living proof that God. Is. Bigger.

💛 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.

Related Posts

What Happens When Your Pitcher of Life Crashes

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

When the Calm Breaks

Brandi C

When the Calm Breaks

We got to the Children’s Hospital ER, and I remember it clearly: that moment when the calm I’d carried suddenly started to fray. This is When the Calm Breaks.

There’s a shift that happens when the staff’s pace picks up, and the attendings—not the interns—start circling. My mama gut was screaming. My outer shell, however, was still trying to convince my insides that maybe they were just being overly attentive. But somewhere deep inside, I knew.

Something wasn’t right.

Blink, and Everything Changes

Without much time to breathe, I suddenly found myself surrounded: the ER attending, the neuro attending, the peds attending… and another one whose name I couldn’t even hold on to. They got H in a gown. I blinked, and they were placing an IV, drawing vial after vial of blood, and running tests. Everything moved fast. Too fast.

I explained to them that we had just been to Vanderbilt and shared what we had been told. I admitted that maybe I was being overly cautious, but I also told them—I just needed confirmation. Two doctors, two different hospitals, two different states. If they said the same thing, I’d be good. The last thing I wanted was to stay.

But then I blinked again… and I saw it.

H’s eyes were moving all over the place. They were dancing in a way that no eyes should move. It reminded me of one of those reptiles with a third eyelid. My calm shattered.

I quietly stepped out and flagged the attending. I kept my face out of sight from H—I didn’t want him to see the panic blooming across my features. That was the moment things sped up even more.

The Mama Who Doesn’t Panic

I’m not the kind of mama who rushes to the doctor for every bump or cough. I don’t run to the ER for every snot rocket or stubbed toe. I’m the one who waits, watches, and gives space for calm to do its work.

I told them that.

I even apologized for possibly wasting their time—because I truly believed everyone would agree it was nothing serious.

They didn’t.

Not even close.

“You will keep in perfect peace those whose minds are steadfast, because they trust in you.”
— Isaiah 26:3

Surrounded, But Alone

My previously healthy three-year-old was suddenly being poked, prodded, sedated, and infused. I was alone—Big Daddy stayed home with our other kids. I was surrounded by doctors, residents, students, and nurses, but there wasn’t a single straight answer in the room.

Finally, I cornered one of the doctors. I told her I was kind, patient, and forthright. I didn’t need sugar-coating. What I did need was honesty.

I understood they didn’t have all the results. Honestly, I wasn’t asking for the final answer—I just needed transparency. What tests were being run? What were they ruling out? Why were we moving this quickly?

I wasn’t going to faint or fall apart. In the end, I was there to learn and there to fight for H.

The Student Who Changed Everything

One young student doctor stood out. He looked barely older than a teenager, but he saw us. In that moment, he got down on H’s level. He played with him, connected with him, and genuinely cared about him—and about me.

However, he didn’t stop there.

This sweet soul took time to make a handwritten list of every test being run, what the tests were for, which had results, and what had been ruled out. It became gold to me. Every nurse that came in checked the list. That list made me feel human again. Informed. Empowered.

The Words That Broke Me

One hospitalist—direct, but not unkind—sat with me and spoke truth I wasn’t ready to hear.

She told me H wasn’t going to get better quickly. That it was likely autoimmune. That every day, he was getting worse. That this might not go away. That our lives were changing, and we needed to make changes to match. Therapy. Equipment. Adjustments.

That conversation broke me.

For the first time, I truly came undone. Not in front of the white coats, but alone. I got H settled watching a movie, stepped into the bathroom, and called my sister.

I let it out.

From the other side of the door, I heard H’s sweet voice saying, “Mama, don’t cry. Come out of the bathroom and don’t cry.”

So I did.

I washed my face. I came out. And we watched Cars for the thousandth time.

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.”
— Psalm 34:18

A Moment—and Then Joy

I decided in that moment—this diagnosis would not define us. Therapy? Fine. Adjustments? Fine. We could do hard things. We had to.

When the team came in for rounds again, there were a dozen of them. They avoided my eyes, timid in the wake of the day before. But I was no longer falling apart.

I stood in faith and told them: Even in times like this, I choose joy.

According to God, this would not defeat us. This diagnosis—whatever it ended up being—was just part of our story. Not the end of it.

I told them that one day, they would see another child like H. They would remember his face, remember the tests, remember the signs. Maybe they’d even remember the mama who didn’t break—but instead stood in faith.

I told them that God would be glorified through this.

And the room changed.

Doctors told us they were praying. Nurses shared encouragement. And yes—some even began to believe that maybe, just maybe, God still does miracles.

“You intended to harm me, but God intended it for good to accomplish what is now being done…”
— Genesis 50:20

💛 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.

 

Related Posts

Tips on Building Self-Confidence

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

“Being Brave” — H’s Story in His Own Words

Brandi C

before the shaking began (3)

Some stories are best told in the words of the one who lived them. Here is “Being Brave” — H’s Story in His Own Words.

It’s been almost eight years since the day H’s world changed—and ours along with it. So much of that journey has been shared through my perspective as his mom, advocate, and witness to both pain and miracles. But today, H is ready to share a little piece of his own story. In his words. As he remembers it.

He’s still just a kid. He’s still healing. But he’s brave enough to look back—and kind enough to want others to understand.

So, with his permission, here is H’s story… told from his own heart.

Q: What’s your very first memory of when your body felt different or something felt “off”?

H: I woke up from my nap and when I did, I was shaking and I couldn’t walk.

Q: Do you remember how you felt when you couldn’t walk or when your legs were shaking?

H: I don’t remember. Now, I feel sad when my legs are shaking and my hands are shaking. I am sad because everyone at school asks me why I am shaking.

Q: What do you remember about being in the hospital? Was there a moment that scared you? One that made you feel brave?

H: I remember that it was a big room and there were doctors in there and I was in a bed. The moment that scared me was when I got the tube in my neck. That scared me because, at the end, when they took it out, I puked everywhere. Then I was crying. I remember being in the air watching me and mom, I was laying in mom’s arms and she was telling me to wake up. I felt brave when I came back to my mom that day. I was also brave in all of my appointments.

“Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
— Joshua 1:9

Q: What was the hardest part of being sick?

H: The hardest part was when I was shaking a lot, I couldn’t even feed myself and I had to be in a wheelchair and I did not like it because I could not walk.

Q: Can you think of someone who helped you feel safe back then? What did they do or say?

H: Mom made me feel safe. She said that she would stay by my side.

Q: What was your favorite thing someone brought you or did for you when you were hurting?

H: My favorite thing that people brought me were toys and people just being nice to me.

Q: How did it feel to not be able to walk when you wanted to?

H: It felt really mad because I just wanted to walk anywhere and I didn’t have the power to do that anymore because my legs didn’t work.

Q: Were you ever mad or confused? What do you wish people had understood about how you felt?

H: Yes, because I didn’t know why I was shaking and I was mad because I couldn’t walk. I wish people understood what it was like being in the doctors all the time and the feeling of not being able to walk.

Q: What does the word “healing” mean to you?

H: It means that Jesus gave me the strength to walk again.

“He heals the brokenhearted and binds up their wounds.”
— Psalm 147:3

Q: If your body could talk back then, what would it have said?

H: It would have said, “I don’t feel good.”

Q: Do you think people understand how hard it was—or do they forget?

H: I think people have forgotten how bad I felt. When some people go through a lot of things, sometimes they don’t remember.

Q: If someone else was going through something hard like you did, what would you want to tell them?

H: I would tell them to be brave because one day, it will all be over.

Q: If your story were in a book, what would the title be?

H: “Being Brave”

Q: What’s one thing about your journey you want to never forget?

H: One thing I don’t ever want to forget is how you stuck by me the entire time.

“Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me…”
— Psalm 23:4

Q: When you think about your future, what makes you excited?

H: It makes me excited that I don’t have to go through any of this anymore. It is all over and I don’t have to do it anymore.

Q: What are some things you can do now that make you proud?

H: I can walk, talk, and feed myself.

Q: Do you think your story could help someone else someday?

H: Yes because if they were going through hard and difficult things, I can help them understand because I went through the same thing.

Q: What kind of person do you want to grow up to be?

H: I want to be a helper.

Q: How do you think God helped you through the hardest parts?

H: He helped me, just like you, He was there the whole entire time. I also learned that God always stays in the same spot, He never moves.

“Jesus Christ is the same yesterday, today, and forever.”
— Hebrews 13:8

Q: If your story were a superhero movie, what would your superpower be?

H: It would be helping.

Q: Can you describe what your legs used to feel like—and then what they feel like now?

H: They used to feel terrible and they hurt a lot. Now, they are much better but they still hurt a little when I stay on them for a long time. I have learned to not stay on them for long.

Q: What color would you give your feelings back then? What about now?

H: Back then, they would be pink (loved) because you were by my side and black (angry) because I hurt all the time and I shook. Now, they are yellow (happy) and pink (loved).

Q: What do you think helped you the most when you were hurting or scared?

H: You being by my side.

Extras from H

  • Favorite songs from that time: “Sit at Your Feet” **This is what he said, the name of the song is
    The More I Seek You** and “Shackles”

  • Favorite food during recovery: Caesar salad

  • What he wants people to know: “I want people to know what I’ve been through so they will understand why my hands shake and my legs hurt.”

  • Final thought: “I’m glad that He was always there for me… and so were you.”

💛 The Heartbeat Moment

This is H’s story. His truth. His hope. And his faith in a God who never moved.

He may still have shaking hands and aching legs… but he also has a voice, a testimony, and a calling to help others through their hard things, because he’s lived through his own.

“Let the redeemed of the Lord tell their story…”
— Psalm 107:2a

Thank you for listening to him. For seeing him. For remembering with us.

Because being brave doesn’t mean not being scared—it means standing tall even when your legs don’t work.
And H? He’s been brave since the beginning.

💛 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.

Related Posts

Nothing is Impossible: One Step at a Time

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Shaking Doesn’t Stop

Brandi C

The Shaking Doesn’t Stop

The Shaking Doesn’t Stop

The Second ER – Misdiagnosis #2

We made arrangements for the kids, packed bags, and headed 2.5 hours to Nashville. We arrived at Vanderbilt Children’s Hospital in the middle of the night. In the end, The Shaking Doesn’t Stop.

They admitted us briefly but said no MRI could be done until morning.

They ran bloodwork and later completed an MRI. I asked for a spinal tap or spinal MRI—they declined. “Not necessary,” they said.

While we waited, new symptoms began to show up. H stiffened his legs like a toy soldier. He shook all over. He couldn’t sit up without help.

The MRI showed nothing. We were told it was Acute Cerebellitis Ataxia, likely caused by a virus—even though he had never been sick.

“Is anyone among you sick? Let them call the elders of the church to pray over them…”
— James 5:14a (NIV)

We were told we must have just not noticed when he was sick. I was stunned.

He is three.
A blind, deaf, mute would know when a three-year-old is sick.

We were told to return if he had a grand mal seizure or if we feared for his life.

Discharged – But Not Done

What I’ll never forget is how flippantly the doctors treated us—how dismissive they were. But what I will remember even more clearly is the nurse who looked me in the eyes and said:

“You don’t have to leave. I can’t believe they’re discharging you, given the state he’s in.”

We knew then—we needed to keep pushing.

“Let us not grow weary of doing good, for in due season we will reap, if we do not give up.”
— Galatians 6:9 (ESV)

The Third ER – Misdiagnosis #3

Still unsettled, I packed up again and drove 3.5 hours to Louisville. I wanted one thing: confirmation.

If two doctors gave me the same diagnosis, I’d accept it and wait.

Big Daddy stayed home with the others. I was hopeful that this time, we’d get real answers.

But even when the world throws labels and shrugs its shoulders, a mother’s gut—and the Holy Spirit—won’t be quieted.

Heartbeat Moment: When the Shaking Begins

That June evening, I had watched H giggle and shout with joy at a ball game. One day later, I watched him crumble under the weight of something we couldn’t name. But in between the popcorn and the panic, I felt something deeper growing—a fire, a knowing.

We weren’t just walking through a medical crisis.

We were walking through holy ground.

And even when we didn’t know the name of what we were fighting,
God did.

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

💛 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.

Related Posts

Courage in EnCOURAGE

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

When Your Child Is a Medical Zebra… or an Okapi

Brandi C

When Your Child Is a Medical Zebra… or an Okapi

When Your Child Is a Medical Zebra… or an Okapi

As I continue sharing our journey with Opsoclonus Myoclonus Syndrome (OMS), I wanted to highlight a valuable resource that may help bring clarity to those who have never heard of this rare condition—or can’t quite grasp how it manifests. Especially When Your Child Is a Medical Zebra… or an Okapi.

There is an excellent video from NORD (National Organization of Rare Disorders) that explains the symptoms of OMS in a simple, visual way. You can watch it here:
👉 NORD OMS Video

For those of you walking this road alongside a loved one, or just wanting to understand better, this is a great place to start. The visual presentation of opsoclonus (uncontrolled, rapid eye movements) and myoclonus (jerky muscle movements) can be difficult to explain—but this video does an incredible job.

But Here’s the Thing… My Son’s Case Wasn’t That Clear.

I wish our experience had looked as “textbook” as this video. But the truth is, my son is what the medical world affectionately calls a zebra—and, if I’m being honest, maybe even something rarer than that.

Let me explain.

In medicine, there’s a saying: “When you hear hoofbeats, think horses, not zebras.” It means doctors are taught to consider the most common explanation for symptoms before jumping to something rare or exotic. But for some patients—like my son—the common answer never fits. That’s when doctors begin to consider the “zebras”: rare diagnoses that don’t follow the usual rules.

And then, there’s my son.

He doesn’t just check the zebra box. Honestly, he confuses even the most seasoned specialists. He doesn’t follow the standard presentation or response patterns. His symptoms come and go unpredictably. His labs are often conflicting. Treatments sometimes work, sometimes don’t, and sometimes cause reactions no one can explain.

So, we’ve taken to calling him our medical okapi.

If you don’t know what an okapi is, that’s kind of the point. They’re one of the most unique, rare, and mysterious animals on the planet. Most people think they’re made up—until they see one. They look like a cross between a zebra and a giraffe, with their own unique quirks. They’re rare. They’re beautiful. And they don’t fit into any neat little category.

Just like my boy.

The Struggle With the Unknown

For families dealing with a rare condition like OMS, there’s already so much uncertainty. But when your child doesn’t even fit into the rare diagnosis they’ve been given, the confusion is multiplied.

Doctors are unsure. Therapies are trial and error. Even the support groups—so full of comfort and community—sometimes can’t offer guidance because your child’s experience is just so different.

And let me tell you… that’s isolating.

But it’s also where I’ve seen God show up the most.

In the absence of clarity, He gave peace.
>In the absence of answers, He gave direction.
>In the absence of a roadmap, He gave presence.

I’ve learned that not everything needs to be understood to be held by the Lord. We don’t need certainty to be carried.

A Visual That Helps Others Understand

That’s why resources like the NORD video matter. They open a door to understanding. They help make the invisible more visible—for family, friends, teachers, and even medical professionals. Even if our story doesn’t align exactly with what’s shown, it’s still a helpful tool to begin conversations.

Because awareness leads to empathy.
Empathy leads to support.
And support makes all the difference when you’re navigating the impossible.

So What Now?

As we continue sharing more about our journey this month, I’ll be diving deeper into how OMS reshaped not just our son’s life, but our whole family’s. I’m hoping to share from his perspective as well—what he remembers, what he felt, and how he sees things now. There are hard questions we’re starting to ask—and bravely beginning to answer.

This series is for awareness, yes—but it’s also for the ones who feel alone in this. The ones parenting their own little zebra… or okapi. The ones trusting God for each next breath, even when the path ahead feels dark and unfamiliar.

Thank you for being here. Thank you for caring.

Let’s keep learning together.

Reach Out

💛 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.

Related Posts

Show Me Your Glory Trailer Review