We are still seizure free and going on one month and two weeks!!! JW is somewhat adjusting to the medicine. His aggression is not as bad since starting B6 and being on it over a month now. We are working on ways to get him to settle down. It's like he can't lay still to nap or rest. He's ok to skip a few naps, but when he goes a week, he begins to have many meltdowns and is very emotional. When he gets the proper rest then he does really well.
We met with a new neurologist today and kind of have mixed feelings. He went over everything from Cleveland and felt that the report and images from Cleveland show scar tissue on the left side of his brain. We may never know if this was something that happened during development in the womb or if the seizures caused it. He does feel that the scar tissue is causing the seizures as well. The PET scan from Cleveland showed abnormal activity on both sides of the brain and so did the EEG. So with those findings and that fact that the Trileptal didn't work he agreed that Keppra was a good medicine to try. Trileptal is used to treat focal epilepsy and Keppra is used to treat generalized epilepsy. Also, he made point for us to not hesitate to use the diastat as to not let seizures go too long and add increase the scar tissue. These things we already knew from Cleveland and since JW is still seizure free (YEAH!!!!), I am not sure we will know if this neurologist is a good fit. Unfortunately, when there are problems that is when you seem to find out. But, he did seem proactive and if seizures return was open to discussing other options and not waste time. That is a big plus for us as was him telling us he could still outgrow them. As long as there is a chance, there is hope and we will fight!
We are optimistic and have another follow up appointment in 2 months. So here's to no seizures for the next two months. . . and forever!!