It's been a strange two days. When we were admitted to the hospital on Sunday, the idea was to have the SPECT test on Tuesday after weaning Byron off the seizure medications. This was the plan we discussed with Dr. Akman last month in her office. She was the one who booked the hospital stay to do so.
This morning, a totally new doctor came into the room and told us that he had consulted with Dr. Akman and they decided that the SPECT test was not necessary. He went on to say that now that Byron has had a full month of total seizure control with medications, that surgery would not be under discussion until/when/if the seizures returned while on medication. He did say that he can tell with 100% certainty that the seizures were coming from the Pariatel Lobe on the right (and not from the "good"side) and he's not sure how much more information the SPECT test would give.
He was amazed that Byron had gone off medications at all, even after the surgery.
Sidebar- I know epilepsy is an inexact science, and there are surgery doctors and medication doctors and many variations in between. Dr. Akman had been, while at Columbia, a very pro-surgery doctor believing that if seizures can be controlled with surgery then it was a vaialble option. Surgery is only considered, however, when three or more medications fail. This was the case with Byron.
The new doctor told us today that now that Byron has seizure control with medicines, no further interventions should be considered at this time.
Well - did we need to come into the hospital to hear that? We could have had a call.
Anyhoo - we did not see Dr. Akman today. We are all coming to terms with the fact that maybe this is the new normal. That Byron will need to be on epilepsy meds for life.
We would love for surgeries to be in the past. If Byron can have this kind of seizure control, meaning complete seizure freedom while on meds, then maybe it's enough - even good. This new Dr. (no name I can remember) went on to say that Byron's seizures are controllable now with medications BECAUSE of the surgeries. So they were a very good thing to have done.
I didn't love this guy. But he did seem to know what he was talking about. I look forward to hearing all this from Dr. Akman tomorrow. I'd also love to hear why she still thought it was a good idea for us to come to the hospital.
The one silver lining to Byron being in the hospital, is that we found out from this doctor that there is a medication in the Keppra family that is new. This drug does not have the rage issues that Keppra can cause, and does cause with Byron. It's not rage exactly with him but extreme crankiness and mood swings. The Dr. asked Byron if he would like to try it while he was in the hospital. In the hospital they can wean from one to the other in a quicker way. Byron was excited to try it so we are going ahead.
