EEG

We will be traveling to Aurora tomorrow to check Otis in for his first long-term EEG in over two years. His last one was for five days during our big trip to Cleveland for surgery evaluation back in September of 2012. Otis will be hooked up this time for 2-3 days in the Epilepsy Monitoring Unit at Children's Hospital. Although we have seen Otis make some great cognitive and developmental gains since we arrived here in Colorado in May and started on Charlotte's Web (and began the slow wean off of Onfi), Otis is still having hundreds of seizures per day, of several different types. We know that his EEG will be a mess, and are dreading what it might reveal about what is truly going on behind the scenes...and what his epileptologist will recommend as a treatment plan. The Debbie Downer in me says he will try to push more pharmaceuticals, which we are NOT interested in pursuing. 

Otis has already been failed by 9--that's NINE--different anti-epileptic drugs (some repeated), all before the age of 3. None of those drugs even put a dent the seizure numbers, and none were without negative side effects (some of which actually caused his seizures to worsen). Not to mention that we have been told by more than one neurologist that at this point, the chances of an antiepileptic drug working to control O's seizures are slim to none. There is some statistic out there--it was quoted to us back in the very beginning of this journey when there was a huge amount of urgency by O's doctors to get his infantile spasms under control as fast as possible (it never happened). It was about how drastically the chances of success are reduced with the failure of each drug. I want to say that there is a 1% chance that a subsequent drug trial will work to control seizures following the failure of the second or third pharmaceutical. If those aren't the exact numbers, I know they're not far off. Fortunately, we do have some additional cannabis options that we are eager to try once we've got this EEG behind us. 

If you feel moved to do so, we ask that you please pray for the best results possible, and for us to have the strength and wisdom to make the best decisions for the treatment of O's seizures going forward. 

Cleveland Clinic EMU, September 2012

Cleveland Clinic EMU, September 2012