We had our 10 month check up after Byron's hemispherectomy. This is the first time we have seen his neurologist since the surgery on November 4, 2017.
She reviewed the MRI and the overnight EEG and confirmed what we suspected - Byron is seizure free! At least for now, and hopefully forever.
We are going to begin to ween off all medications starting today so that by the one year anniversary of the surgery, he will no longer be on any seizure medicine.
Then we will do one more overnight EEG to confirm that even without medication, he is seizure and ESES free.
She also asked several things of us: if Bob and I would speak to other patients and parents going through the same thing, if Byron would speak to a large conference of nurse practitioners in a few months, and if Byron would consider being in one of the commercials for the hospital called "Amazing Things Are Happening Here." We said we would be willing to consider all and to stay in touch.
She also told us that because of Byron, she spoke to the director of the hospital about being more aggressive in letting people know that the hospital does this type of surgery. Last year we told her that when we were first looking for hospitals for this surgery, Columbia never came up on list-serves, parent groups or seizure blogs. She said then, that she wants to change all that, and today she confirmed that the hospital was moving in that direction. That's really great news, because Columbia really is a good place to have a Hemispherectomy. And in partnership with Blythedale for rehab, it makes it very easy to go through the whole process.
I stumbled across your blog today in search for answers. My son, Cooper had a functional hemispherectomy in April 2018. He rarely had noticeable seizures, but had ESES. He had a stroke at birth and has weakness in his right side. Medically, he is doing great! Post operative EEG showed no signs of ESES. We have weened off some meds, will do more after our year checkup.
ReplyDeleteHowever, we are having a very difficult time with behavior. His sleep cycles seem to go from good sleep to not so good very light sleep. During the poor sleep cycles he has issues with rage at home and school. He is 10 years old. He is on behavioral medications and we have tried many. Would love to hear if you have any insight with respect to behavior.