The topic of getting a second opinion isn’t the most glamorous, I totally get it, but there is a reason I am starting here.
When Remy first started having seizures, we assumed that the neurologist at the hospital (who sees thousands of epilepsy cases a year) would be able to guide us and show us the way. She was supposed to know everything there was to know about epilepsy and seizures and treatment, but as we found out, not only did she not know, she overlooked some critical information that would give us answers we desperately needed.
I believe all of us parents should feel and know that our children are getting the very best treatment and care. But as we all eventually find out, a lot of times, our kid’s aren’t getting that level of care they deserve.
Getting a second opinion (or third, or fourth) can give us answers that we would never have gotten if we only listened to one person’s perspective.
In this episode, I tell the story about Remys experience and what we learned.
Thank you for joining me, and I hope this episode can help get the gears spinning if that is something you are considering for yourself.
To learn more about PCDH19
PCDH19 Alliance Website
Also, if you want to check out the GeneDX site, here is that link too
Here is where you can connect with me, and I hope you do 🙂
Friend me: Jody Warshawsky