Author Joni Brown
But have you tried…
I find myself in light conversations about epilepsy or autism among acquaintances. Such as,
“I gave my dog CBD oil and his seizures stopped! Have you tried CBD oil for your daughter Allie?” Big sigh.
My husband and I will stop at nothing to help reduce seizures in our daughter Allie who lives with PCDH19 epilepsy. We have racked our brains trying to solve this mystery of the least amount of seizures and best quality of life. To give you an idea of the measures we have done, I would like to share a small sample (from my memory) that we have done or tried in no particular order:
Bio and neurofeedback sessions
CBD oil tinctures
Food elimination and restriction diets
Free of artificial colors and dyes
KETO (failed in hospital trying)
12 epileptic drugs
Other essential oils (some induced seizures)
Extra sleep modifications
Bedding and pillows
Vitamins and supplements (too many to list)
Discussed brain surgery with epileptologists (never had brain surgery)
I am sure we have done more, but the last 20 years have been a blur of medical mayhem.
At one point we were working closely with a functional medicine Doctor that was recommended to us by another seizure mom. What we love about functional doctors is they want to dig a little bit deeper. A primary care physician (PCP) is a good first step, but a functional medicine doctor differ in their approaches to patient care. PCPs serve as the first point of contact within the healthcare system, offering general care, and management of common conditions, we all know that. On the other hand, a functional medicine doctor may take a more holistic approach, seeking to understand the root causes of health issues by considering lifestyle, environment, genetics, and health history.
Right out of the gate (our first appointment) our functional doctor called for xxx lab tests to be done. We did them right away! 12 viles of blood, fecal, urine and salvia samples done and were sent to the labs. Quietly and slowly they came back. The results showed deficiencies, metabolic disorder and a few other items that we needed to address. It really is all part of the sleuthing. The gathering of information that could help one more area of her health and well-being.
Where do we go from here?
We are still on the path of discovery. Never stopping. But little pieces of the puzzle trickle in, and we slowly piece together what get got. And, of course the goal is always the same: reduce seizures with the best quality of life. A seizure free day is a great day.