01/29/2026
Today was my little man's follow up with neurology.
I have so many mixed feelings when we make the trip to Riley Children’s Hospital in Indianapolis, IN.
With this trip, Gunnar and I reserved a hotel room since we didn’t know how traffic or the roads would be early in the morning. It felt better to be close to the hospital. He was excited, so I was excited.
We spent time at the Children’s Museum this morning and we made a date out of the last two days.
And while my heart loves creating these memories with him… the truth is, this trip also brings up a lot of emotions for me.
Why?
Because we drive out of our way to go to Riley Children’s Hospital.
We drive out of our way because the neurologist we had close to home didn’t listen to my concerns.
Well… he did listen.
He documented my concerns well.
But he did nothing to address them.
And as a parent, that’s frustrating.
As a nurse practitioner… it’s infuriating.
I am a nurse practitioner who studied both in and outside of traditional medicine. We have a complicated health history, and I’ve learned the hard way you cannot always rely on the system to do what is right — you have to advocate until someone hears you.
We later learned I have a rare genetic epilepsy and now I know I have a Mitochondrial Disease both cause Encephalopathy and seizures. My daughter has three rare encephalopathy epilepsy genes. Since they were autosomal dominant, neurology said my son likely had at least one of the three genes she carried.
Here’s the problem:
For three years they documented my concern.
For three years Neurology REFUSED to perform genetic testing on my son.
I was told to ask my neurologist if he would perform full genome sequencing — and that was also a refusal. My husband had to see neurology too. They refused full genome sequencing for him as well.
They said the same thing over and over:
“It wouldn’t make a difference.”
“It wouldn’t change his plan of care.”
“It isn’t necessary.”
But that mindset is EXACTLY why so many patients and families are dismissed.
The last time my son had seizure-like symptoms was following an illness. This seemed to be the trigger to send him over the edge. I had a dream... or maybe it was intuition… or maybe it was my healthcare experience.... Personally, I believe it was an answered prayer from God… I couldn’t shake the thought:
What if I’m unknowingly treating his condition with herbs, supplements, and lifestyle with my functional and holistic medicine education?
I told my husband:
“When we have his EEG… do NOT give him his supplements.”
After years of fighting we Finally had an abnormal EEG. My son was started on seizure medication and everything changed. His life became easier and so did mine.
Yet STILL… the neurologist he was seeing at the time refused genetic testing. Again, he said it wasn’t needed. That it wouldn’t change anything.
I had to insist.
I refused to accept NO as an answer.
He reluctantly ordered it. He made sure I understood he didn't feel like it was necessary or would change his plan of care.
He refused to submit it through insurance and I had to pay out of pocket.
I am SO glad I did.
Because my son’s genetic epilepsy testing changed EVERYTHING.
It changed the plan.
It changed the urgency.
It changed what medications were appropriate.
It changed how we looked at his symptoms.
It changed the entire direction of his care.
He tested positive for two extremely rare recessive encephalopathy epilepsy genes. I had been unknowingly treating his condition. Traditional Medicine has no cure. Seizure medicine alone will not help with his type of seizure disorder. The best thing traditional medicine has found is high dose vitamin B6 and even this hasn't been fully effective at managing seizures caused from Pyroxidine (B6) Dependent Epilepsy.
And the best part... it confirmed what I already knew deep down:
Something was being missed.
I was treating his condition
When he became sick or more physically active he needed a higher dose of vitamin B6. I had the answer I needed. I knew how I could further help my son. There may be no CURE. There may be only 400 known cases of this condition. This may be progressive BUT I wasn't going to accept that. I dove deeper into functional and holistic medicine.
I fired his neurologist.
We sought a second opinion with a neurologist closer to home… and unfortunately, we still weren’t being heard. His needs still were not being treated as a priority. My use of natural medicine was chastised even though it was helping.
So I asked his pediatrician for a referral to Riley Children’s Hospital — because they have a specialist for his condition. I prayed they would be open to my management of his condition. Developmentally he shouldn't be the young man he is becoming.
I am so grateful I listened to that momma intuition.
For the first time, someone took the time to review his chart from beginning to end.
She listened.
She cared.
She included me in his plan of care and decision making.
She wasn’t vindictive, arrogant, or pushy when I brought new knowledge to the table.
She didn’t act like she was threatened by what I knew.
She actually wants to learn — and most importantly, she wants to do what is best for my son.
And THIS is why I’m sharing my story:
If you are not being heard…
If you are not being seen…
If you are not being listened to…
If you are being gaslit…
If your concerns are documented but never acted on…
If you’re told “we’ll just wait and see” when your gut is screaming otherwise…
Find a new provider.
You get to choose the people who help manage your health, wellness, and illness.
Remember: Sometimes waiting is appropriate. Sometimes it’s exactly what needs to be done.
But you should get a choice.
You should get to ask questions.
You should get to be part of decision making.
And remember this:
A negative test doesn’t mean nothing is wrong. It just means the test didn’t pick anything up.
I was taught:
“If it looks like a duck, walks like a duck, and quacks like a duck… then it’s a duck until proven otherwise.”
That is how I was taught to practice medicine — before technology reliance became the only “proof” people trust.
And honestly?
That mindset makes patient care BETTER.
I share my story because I know it will help at least one person — and that’s all I want to do: share my knowledge and help someone heal their own body.
This is why, after years of struggling with my own health and fighting for my children’s right to great healthcare, I created my health coaching practice, It's Your Health
Because no one should have to fight this hard to be taken seriously.
And no parent should ever feel alone in advocating for their child.
We all need someone to help advocate for our loved ones.
I am turning this battle into purpose through It’s Your Health. I want to be different: I am not just educating people… I want to empower you to advocate for yourself, be willing to step outside of traditional medicine and use ALL of God’s Medicine because no one person can know it all. Together with the right team inside and outside of traditional medicine we can start to Take Back Our Health.
