A GREAT article on pediatric epilepsy surgery

In doing some searching around for ways to best explain the type of surgery Otis is facing, I stumbled upon this great article published by the Department of Neurosurgery at the University of Pittsburgh Medical Center:

http://www.neurosurgery.pitt.edu/epilepsy-pediatric/surgery/hemispherectomy.html

The MRI and PET scans found that the left side of O's brain is malformed, and the pediatric epilepsy team at Cleveland Clinic believe that much of his seizure activity is coming from that side. In viewing the MRI images, the differences between the right and left sides of his brain were very obvious. The MRI also showed some subtle abnormalities on the right side of his brain as well where some seizure activity may be originating, but they feel that if there is anything coming from that side, it is probably minor compared to the chaos coming from that left side.

The neurosurgeon, Dr. B, seemed to prefer the functional hemispherectomy over the anatomical hemispherectomy, as it offers much less risk in terms of blood loss, hydrocephalus, and complications (including infection) involving the necessary placement of a shunt with the anatomical procedure. With the functional procedure, it is possible that a follow-up procedure might be necessary if the surgeon somehow misses some of the connections when disconnecting the left hemisphere, but there is also a great chance that he will get it all the first time, allowing Otis the chance to be seizure-free (or have the number of seizures greatly reduced). If any connections were missed during the initial surgery, we would know within a week or so following the surgery, gauging from O's seizure activity during that time. We were told that kiddos are usually kept in the hospital for 10 days to 2 weeks following this procedure:  4-5 days in the ICU followed by a transfer to the Pediatric Epilepsy Monitoring Unit, where we stayed during our first visit. An older kid would probably then be transferred to an inpatient rehab facility, but Otis would be released to go home to begin work with in-home occupational and physical therapists.

We have not scheduled surgery yet, but are looking at at a timeline of somewhere between 6-8 weeks from now. There are a few things we still need to clear up with the pediatric epilepsy team at Cleveland Clinic, the biggest being what to do about the Ketogenic Diet. At this point, we're not sure whether he will be able to stay on the diet at a lower ratio, or if we'll have to wean him completely off of it in preparation for the surgery. We are already working with our Keto team at Children's Mercy to begin a wean, and have gone from 3.75:1 to 3.5:1 this week, with a plan to decrease by .25 each week. If the CC team feels that it is safe for him to be at a 3:1 ratio during the surgery, we will stop there. If not, we will continue the wean until he is completely off of the diet.