06/10/2026
I have epilepsy. My daughter has epilepsy. My son also has epilepsy.
My son has a neurometabolic Encephalopathy with vitamin B6 epilepsy. Our seizure disorders do not present the same. They are all caused by different Encephalopathy epilepsy genes. Overall we have six different Encephalopathy genes.
Neurology felt like it was a good idea to discontinue my seizure medication last summer. That was the worst decision of my life. I did well until I ended up with a simple cold. This sent me on a downhill spiral. I ended up going from GI symptoms to cardiac symptoms and neurological symptoms.
I have autonomic seizures with focal seizures and nocturnal seizures. My seizures are located in the temporal lobe. They cause hyperprolactinemia.
My son's seizure symptoms occur in the frontal lobe and mimic ADHD. It is commonly MISDIAGNOSED as autism.
My daughter has Myoclonic Generalized Epilepsy. She has been controlled without seizure medication for more than three years.
The only known history of seizure disorder in my family was I had febrile seizures as a child.
Looking back I had symptoms of seizures for decades. They just weren't identified until I suffered a stroke like injury in 2018. I had to fight to get a diagnosis which led to my daughter's diagnosis and eventually my son's diagnosis. I literally lived through hell here on Earth.
Today I finally get my life back with fewer doctor appointments. After being in PT for over a year to recover from three separate injuries, deconditioning, muscle spasms, cramping, and more I can say I have control of this again.
I should be in a wheelchair but I'm not. I should have died 7 years ago but I didn't. God's clearly not done with me yet. I have never fought hard for a diagnosis. I fought hard for management of my symptoms. A diagnosis will eventually come. It is unfortunate Traditional Medicine didn't have anything to offer me except more testing.
Today I learn I can retire from physical therapy care in about a month. I have control of my condition again. This is the fifth flare I have had since 2012. My flares (like my son) typically follow illness.
I finally have confirmation I have Mitochondrial Encephalopathy. I am waiting for additional genetic testing. The frustrating part is that only 50% of genetic testing is positive. If testing comes back negative then we know I have Mitochondrial Encephalopathy. We will just not know which variant.
Personally I think if we look at the big picture maybe they should all be managed the same way. Right now we don't know. What I do know is my history is consistent with three different variants of Mitochondrial Encephalopathy. The only way to treat these conditions are An individualized set of supplements for Mitochondrial Disease. We all don't present the same. Traditional Medicine says there is nothing they can do except supplements. This is progressive. There is no cure. There is no treatment. Some conditions are much worse than others and present very early in life. There are not many healthcare providers educated in Mitochondrial Disease. This is a disadvantage to all of us.
I am grateful to have learned Holistic and Functional Medicine steps in and says... Traditional Medicine doesn't have much to offer you but We've got this. There is hope. There is something else we can do. We just need the right help to guide us on a path to make things better and not worse
I thank God everyday he made me a nurse practitioner and pulled me into holistic medicine in 2012. This is when I first started suffering from symptoms Traditional Medicine couldn't explain. It took 5 years for s**t to hit the fan
I thank God everyday he pulled me into Integrative Medicine and functional medicine over the past 6 years. They provide additional tools in my health and wellness toolbox.
I thank God he gave me a vision in 7th grade. I use to study to help my kids and myself. Today I get to share what I know with others through my practice as a health coach. There is ALWAYS something else we can do. We need to create our own healthcare team both inside and outside of traditional medicine.
Mitochondrial Encephalopathy may be my diagnosis but it doesn't control my life. I may always have to fight to stay ahead. There may be no cure but there are always things I can do to slow down the progression of my condition.
Neurometabolic Encephalopathy may be my son's diagnosis but we control it by using All of God's Medicine not just traditional medicine. I don't need a CURE. I just need to utilize what we have been given to better manage his symptoms.
We don't dismiss traditional Medicine. We have prescription medication we have to take. Last year I learned the hard way sometimes coming off of these medications are the worst decisions we can ever make.
The way to help our body heal is by using all of the tools we can afford. After all there are millions of treatment options out there. We just have to work with someone whose willing to slow down, listen to our story, and find what we haven't considered, that's been overlooked, or completely ignored.
It's Your Health
