Disappointment

Sophia had another seizure last night. The Mapping that has been going on narrows the area to indicate a more precise location of the locus of the seizures. She has 2 types of seizures and she had the 2nd type last night (partial complex). It's good that they got the information from that seizure. What they have found is that her tonic-clonic seizures come from her frontal lobe. Dr. Constantino had determined this was the case through previous testing and was very hopeful that this could safely be removed. One thing that can happen during the mapping, is the information obtained can show that the patient is not actually a good candidate for the resection surgery. Unfortunately, it looks like the locus of her tonic-clonic seizures is incredibly close to the motor area of her brain. That makes it extremely risky to perform a resection or other type of surgery due to possible (maybe probable) motor function loss. The partial-complex seizures come from her temporal lobe. If you observe her, these seizures look like they are not as severe because she is not jerking like the others. However, it is this type of seizure that is causing the very frequent (several times per minute) spiking in her brain. Meaning, she doesn't appear to be seizing, but there is activity going on that is negatively affecting her brain. The surgeon said today that he thinks this area can safely be removed, and further, there is evidence that this area of her brain is damaged with scar tissue and shrinkage so the right hemisphere of her brain has taken over those functions some time ago.

I really appreciate both doctors coming in on a Sunday to talk to us about this. Unfortunately, it is not what we expected, nor what we hoped would be the result of this ordeal. The surgeon talked to me in Sophia's room so she heard what he was saying. She had some misconceptions (she thought she might go deaf), so I figured it was best to be straight with her and explain what we know so far in a way that she can understand. She was very  upset when she heard she will probably still have seizures after this surgery. She cried, "I just want to be like everyone else," which is pretty much what I have been mourning since I got the news.