The doctor appointment went well Monday. He didn't have much information about it due to it being so rare and unfortunately understudied
He did try his best to explain it better and take more notes. He will send the scans to my new neurologist and hopefully he will have a bit more info.
His main concern for the most part are the seizures. He, like us want them better under control. No one can really put a label to what they are I have been told NES and I've been told Epilepsy. I know that colpocephaly can cause seizures among other things. It's been a frustrating journey since December 2020 when they first started.

On the upside my parents are glad that I have a name for what's going on with me. When I told one of my parents they said I had your mom look it up and this is definitely what was going on with you growing up but nobody had a name for it.

It was rough growing up in the 90s-early 2000s with some of the issues I was dealing with but I made it through. Thanks to the support I had growing up with school teachers and my parents trying probably pouring over books and phone calls trying to figure out how to help me.

I'm hoping here on out it'll be a bit more smoother sailing on trying to figure this out more. I know life has speed bumps and every day I have to adjust and accommodate to my needs but I just need to put one foot forward even if that means wheeling that foot forward too.

#Spoonie #Colpocephaly #SeizureDisorder #AmbulatoryWheelchairUser