When Doctors Say It’s Reflux: Trusting Your Gut and Fighting Infantile Spasms

I’m going to be honest—I have a really hard time with the phrase "mother's intuition." Not because I don't believe in it, but because it often gets dismissed as anxiety, paranoia, or just being a "new mom."

But after sitting down with Jordan, I am more convinced than ever that a mother’s gut feeling is actually a survival instinct.

Jordan is a mom who looked at her nine-month-old daughter, saw a tiny, weird movement that everyone else brushed off, and refused to let it go. She didn't have a medical degree. She didn't have a history of epilepsy in her family. She just had a feeling that something was wrong.

And she was right.

Her daughter, Reagan, was diagnosed with Infantile Spasms (IS), a rare and catastrophic form of childhood epilepsy that can cause permanent brain damage if left untreated. Jordan’s story is a masterclass in advocacy, resilience, and the absolute chaos of parenting a medically complex child while your partner is thousands of miles away.

We need to talk about the reality of medical parenting—not just the "strength" everyone praises, but the trauma, the financial terror, and the isolation that comes with it.

The Twitch That Changed Everything

Jordan’s life was already chaotic before the diagnosis. She comes from a massive family (the oldest of 13 kids!), so she knows how to handle a busy household. But her day-to-day reality was lonely. Her husband works in the wind tower industry, a job that keeps him on the road for five weeks at a time, leaving him home for only one.

So, when things went sideways, Jordan was often steering the ship alone.

It started when Reagan was nine months old. After a round of routine vaccines, Reagan threw up and started making a strange movement. Jordan described it as a "twitch," almost like a startle reflex or the beginning of reflux.

She called the nurse line. They told her it was normal. She showed friends. They said, "She’s fine, you’re overthinking it."

But Jordan couldn't shake the feeling. "Something in my gut just didn't feel right," she told me.

She booked an appointment with her pediatrician, praying that Reagan would do the movement in the office so she wouldn't look crazy. Within a minute of the doctor walking in, Reagan did it. The mood in the room shifted instantly.

"You need to go to the hospital. This is a form of a seizure."

That was the beginning of a terrifying new reality. They rushed to the hospital, hooked Reagan up to an EEG with 40 electrodes on her tiny head, and watched the chaotic lines on the screen confirm their worst fear: Infantile Spasms.

The Treatment Rollercoaster

If you think the diagnosis is the hard part, wait until you hear about the treatment. The doctors hit Reagan hard with steroids (prednisone) to try and stop the spasms.

The side effects were brutal. Reagan, a nine-month-old baby, gained eight pounds in nine weeks. Jordan described her as looking like the Michelin Man, her little body so swollen she couldn't even crawl anymore. Her development stalled. She stopped talking. The medication turned her into a different baby.

When the oral steroids didn't work, they moved to injections of a drug called ACTH. And this is where the American healthcare system really shows its teeth.

The medication cost $90,000 a vial.

Reagan needed three vials in a month.

Let that sink in. Jordan had to navigate special approvals, insurance battles, and programs just to keep her daughter from having brain-damaging seizures. Thankfully, they got coverage, but the stress of knowing your child's health has a six-figure price tag is a trauma all its own.

When the meds still weren't doing enough, they turned to the "last resort": The Ketogenic Diet.

Now, this isn't the keto diet your coworker does to lose ten pounds. This is medical keto. Jordan had to weigh every single gram of food. Reagan was eating eggs whipped with heavy cream and butter—meals that were almost entirely fat. One slip-up, one gram off, and the seizures could return. They did this for a year.

3 Things I Learned About Medical Advocacy

Jordan’s story made me realize how much we misunderstand the "medical mom" life. It’s not just doctors' appointments; it’s a total lifestyle shift. Here are three things I took away from our conversation.

1. "At Least It's Not Terminal" is Not a Comfort

This one hit me hard. Jordan opened up about the toxic positivity she faces in support groups and from well-meaning friends. Because Reagan looks "normal" and isn't facing a terminal diagnosis, people often say, "Well, at least she's not dying."

We have to stop doing this.

Pain is not a competition. Trauma is not a oppression Olympics. Jordan said it perfectly: "Just because it could be worse... doesn't mean it's not our worst. It's the worst thing that we've experienced."

Validating someone's pain doesn't take away from someone else's. We can hold space for the parents of terminal children and the parents of children fighting chronic illness. Telling a mom "it could be worse" doesn't make her feel grateful; it makes her feel guilty for struggling.

2. Intuition is Data

Jordan isn't a doctor, but she diagnosed her daughter before the professionals did. Why? Because she pays attention.

Doctors see a patient for 15 minutes. Parents see their child for 24 hours. Jordan noticed a subtle shift in Reagan’s behavior—a twitch that looked like reflux—and flagged it. If she had listened to the nurse line or her friends who told her to chill out, Reagan’s brain could have suffered significantly more damage.

If you are a parent and something feels off, be the annoying person. Make the phone call. Record the video. Demand the appointment. As Jordan said, "Be that annoying person that makes a million phone calls." Your gut is a valid data point.

3. You Have to "Date" Your Therapist

Jordan is managing a special needs child, a husband who travels for work, multiple jobs, and her own ADHD. She freely admits, "I don't know how I'm going to make it through."

Her lifeline? Therapy. But not just any therapy. She found a therapist she clicked with (ironically named Ashley, her middle name) and leaned in.

She brought up such a good point that we’ve talked about before: you have to find the right fit. If you go to one session and hate it, don't quit therapy—quit the therapist. Jordan’s mental health is the foundation that keeps her family standing. She recognized she needed medication and support to be the mom Reagan needed, and she wasn't ashamed to ask for it.

The Expert Take: The Genetic Guilt Trip

There was a specific moment in this interview that broke my heart for Jordan’s husband. During their journey, they did genetic testing to see if there was a root cause for Reagan's issues.

It turned out Reagan has a rare chromosome deletion (3q25.1), something only a handful of people in the world have recorded. And she inherited it from her dad.

Jordan’s husband was devastated. He felt like this was his fault—like he had passed this burden onto his little girl.

This is a heavy, silent burden that so many parents carry when a diagnosis is genetic. But here is the reality: biology is not blame. Jordan’s husband had no idea. He didn't do anything wrong. We carry thousands of genetic variations, and sometimes, the dice just land in a way we didn't expect.

Navigating that guilt while he was isolated for work, thousands of miles away in a wind tower, must have been crushing. It’s a reminder that medical diagnoses don't just happen to the child; they happen to the whole family unit. It impacts the marriage, the finances, and the mental health of everyone involved.

You Are Your Child's Voice

Today, Reagan is doing incredible. At the time of our recording, she had been seizure-free for 182 days.

She’s on a new medication schedule, she’s in therapies, and she’s starting preschool. She is walking, talking, and making up for lost time. She is a miracle, not because she was "cured" overnight, but because her mother fought for her every single day.

Jordan’s advice to her younger self is advice we all need to hear:

"Listen to your gut and just never let that go."

If you are in the thick of a medical mystery, or if you are fighting insurance companies for a medication that costs more than a house, please know you aren't alone. You aren't crazy. And you are the best thing that ever happened to your child.

If you want to connect with Jordan and ask her about her journey with Infantile Spasms, you can find her on Instagram at @JordanPashon2012. And as always, if you need a place to vent about the "at least it's not terminal" comments, join us in the Facebook group. We get it.

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