10/04/2026
This is my son at six months old.
He was born healthy. He met every milestone on time—or even ahead of schedule. He had several teeth before he was six months old. He was happy. He was active. He was thriving.
There was no obvious indication that something was wrong.
Or at least, that's what I thought.
Looking back, in hindsight, I can see the things that were missed.
Things were overlooked.
No one connected the dots.
Doctors didn't listen.
Even I overlooked it.
And testing that could have made a difference was repeatedly refused.
My son had a few episodes as an infant that, looking back, were infantile spasms. At the time, I always found something else to blame his movements on
The cat walked into the room.
I made a noise.
I startled him.
I didn't know what I was seeing.
We didn't learn about infantile spasms in nursing school or while studying to become a nurse practitioner.
He was breastfed during the day and bottle-fed at night. I was a busy working mom with two children. I wanted my husband to be involved, and I needed sleep, too. Looking back I am so grateful I choose both over one or the other. This likely saved my son's life. He was provided the nutrients he needed from the best of both worlds.
He saw ophthalmology as an infant and was diagnosed with alternating strabismus—crossed eyes.
I questioned whether what I was seeing could be seizures.
Opthalmology reassured me this had nothing to do with seizures.
Over and over, concern after concern, I was told:
"This isn't something to be concerned about. This isn't concerning for seizures."
You see, I was concerned. I had febrile seizures as a child. I learned through continuing education febrile seizures could have an underlying genetic component to them. Those who have febrile seizures as a child may develop seizures in the mid twenties. This was new research from almost a decade ago.
I also had concern I was having seizures. For three years I was dismissed only to find out later I had been having focal seizures. Year after year I was told you need more sleep. You have a lot on your plate. I was dismissed by the system I had dedicated my life too.
With my son, I was blessed to breastfeed him until he was 14 months old. I was blessed to have a large supply of breast milk. Even while working and raising two children, I made breastfeeding an important part of his life. It wasn't his only nutrition. He was bottle fed every night. He continued receiving breast milk and she appropriate formula until he was about 2½ years old.
This is when everything changed.
My baby boy came down with influenza B.
He had his first obvious febrile seizure.
By the time I recognized what was happening and got him to the ER, the worst of it had passed. He didn't have any additional seizures at that time.
I was told there was nothing to worry about.
But that wasn't the end of the story.
Neurology refused genetic testing for years. Our personal family story allowed my daughter to be tested. It confirmed what gene was causing her seizures yet my son didn't receive the same care. They said if would change anything. He wasn't having seizures and febrile seizures are common. Morning to worry about.
For five years, I watched my son regress with each illness he experienced.
At age seven, I started wondering:
**What if I am unknowingly treating his condition?**
He became sick again.
This time, when he was preparing to see neurology, I stopped all of his supplements.
Finally, after years of fighting for my son, we had an **abnormal EEG.**
I had to stand my ground.
I had to refuse to accept "no" when I asked for genetic testing.
For years, I had been told it wouldn't make a difference.
**The truth is, for my son, it absolutely did.**
Genetic testing showed my son has a "rare recessive genetic neurometabolic Encephalopathy caused by Pyroxidine (vitamin B6) Dependent Epilepsy. A condition involving seizures that don't typically respond well to seizure medication. They can respond dramatically to pyridoxine (vitamin B6). Treatment for his condition is a supplement.
For years, we knew something was wrong.
And doctors—people in the same profession I had dedicated my own life to—dismissed my concerns.
There was testing available.
It wasn't done.
I was told it wouldn't make a difference.
It turns out it ABSOLUTELY did.
IT CHANGED EVERYTHING!!!
What I learned as a mother....
**ALWAYS listen to your momma gut.**
No one knows everything.
And everyone has something to teach us.
If your doctor isn't listening to you, find someone who will.
If you know something is wrong with your child,
don't stop advocating.
If you can't get the answers you need from your local healthcare system, seek another opinion. Go to another hospital. Find another specialist. Build a healthcare team that is willing to listen and work with you.
When I finally received my son's epilepsy genetic testing, I made the decision to move on from his neurologist. I fired him.
The next neurologist wasn't any better.
Thankfully, Riley Children's Hospital has a neurogenetics department. Thankfully my education in holistic, functional, and integrative medicine allowed me to provide my son a better outcome. Riley Children's Hospital supports my use of natural medicine. They have not needed to do anything extraordinary for my son beyond helping manage his prescription medical care and provide me emergency seizure medication just in case.
As his mother, I have continued to look at the **whole picture**.
I have incorporated holistic approaches alongside his traditional medical care, and I know these approaches have played an important role in his health and quality of life.
Traditional medicine has an important place in healthcare. They save lives everyday but it's not ALWAYS the best option to start with. Sometimes there's are things we can do at home first. This was known as basic home care treatment.
Holistic medicine has a place am important place in our manage of healthcare too.
**I don't believe we have to choose one or the other.**
For my son, finding the right pieces from both approaches has made a difference.
His seizures have been managed with vitamin B6 therapy along with his prescribed seizure medication and a cocktail of other supplements that carry from time to time. His medication has remained the same since we finally found an approach that worked for him.
And after years of speech therapy, occupational therapy, support through Brain Balance, and assistance at school...
**My son has his everyday life back.**
That is something I will never take for granted.
I know every child's story is different.
I know every diagnosis is different.
And I know what worked for my son may not be what works for someone else's child.
**I'm not sharing our story to tell you what to do.**
I'm sharing it to give you **HOPE.**
Sometimes you have to keep asking questions.
Sometimes you have to seek another opinion.
Sometimes you have to look outside the box.
Sometimes you have to build your own healthcare team—bringing together providers from traditional medicine, functional medicine, holistic medicine, therapy, education, and other areas that can help your child.
**Never stop advocating for your child.**
Never assume that a normal test means nothing is wrong.
Never be afraid to ask, *"What else could this be?"*
And never underestimate what a determined parent can uncover when they refuse to give up, dig into the scientific research, and approach a doctor in the right way
You never know what tomorrow will bring.
Keep fighting.
Keep learning.
Keep asking questions.
Keep searching for answers.
Because sometimes the answer is out there...
You just have to keep going until someone is willing to look with you and listen
It's Your Health
Take It Back
If you haven't been able to find that right person to listen to you maybe a drive to a small town just west of Louisville, KY can make a difference.
There is no greater proof Holistic Medicine works than the stories I have to share.
learningtolivehealthier.com
