The verdict is in...

My family and I just returned from Children's Hospital in Birmingham, AL.  We had to go meet with the brilliant and determined Dr. Kim to discuss my options to control my Epilepsy.  She spent almost two hours with my parents and me and reviewed several EEG's and showed us her interpretation and reasoning for moving on to the next step.  That next step is the subdural grid evaluation and resection.  As I described in my last post, this process will be very involved and possesses all of the inherent risks that brain surgery presents.

Since my Corpus Callosotomy, my seizures have not decreased.  They've only changed.  The benefit is that now the team has a clearer picture of the epileptogenic area.  Dr. Kim can now see the that there is in fact a seizure foci, and it's originating in the right frontal cortex.  That, in conjunction with a slight abnormality seen in the MRI and hot spots that show up in the same region on the Ictal SPECT, lead the team to conclude that they can reduce 70-80% of my awake time seizures.  I still have sleep time seizures too, but those originate in the left hemisphere near midline and are too close to my motor cortex for surgery.

This has not been a short trip to find a "cure".  This Journey has taken almost 8 years and has included nearly 15 hospitalizations to monitor my Epilepsy.  I've been on 8 anti-Epileptic drugs and have had many different combinations administered.  Once a patient has had 2 drug failures, then statistical likelihood of drug controlled Epilepsy is nearly 0%.  I've been to some of the most advanced research hospitals on the east coast.  I've seen physicians at Wake Forest/Baptist Medical Center, Medical College of Georgia Children's Medical Center, Duke University Children's Medical Center, Emory University Children's Center and finally Children's Hospital/University of Alabama.  I've had my case presented and reviewed at Baylor University, the National Institue of Health and John's Hopkins Hospital.  Not to mention all the general practitioners, nurses, geneticists, etc that have guided my parents and me on this Journey.

This summer will be it as far as what is currently available to control my Epilepsy.  This, in essence, is the final stop of my Journey to cure my seizures.  If all goes well, I'll be nearly 80% seizure free and my quality of life will improve and continue to improve as I grow and recover from this procedure.  Now my parents have to decide...is this the right path for me and does the benefit outway the risk.  Nothing in medicine is ever certain, but you have to trust the professionals and know that they're doing their best to improve life.  My parents and I believe in Dr. Kim and Dr. Blount and the whole Epilepsy team at Children's Hospital.  They've presented my case at their conference and have come to a consensus that this procedure is the next, and probably final, step in our Journey to end my seizures.  Will I awaken from anesthesia and be a normal boy?  No probably not, but at least my brain won't keep rebooting itself 40-50 times per week while I'm trying to learn to walk, talk, and do things that normal kids do.

Comments

[Grandmom Micki]

Xavier, What an eloquent explaination of your life trials! It has been a very long journey and one that has required much love and support from everyone. Through the grace of God and continued support will you be triumpant and may you continue to inspire more love than anyone else I have ever incountered in my life. May your spirit of 'love' incarnate bring joy and an increase in faith to all those you encounter. God works in mysterious ways and we trust in HIS love for you and ask continued blessings for you, your family and the medical team who will be caring for you as you continue on this journey of hope.......