Seizures continue

Lively's neurologist called us Thursday night for updates, which I really appreciated. At that point, Lively had been taking the ACTH for 10 days. Pete and I are certain that it has made a difference -- Lively's seizures were worsening by the hour for the first day or two we were in the hospital, but after 2 or 3 days on the ACTH, they definitely became less intense and less frequent. However, he still noticeably rolled his eyes up and to the left, which we felt was persistent seizure activity.

The neurologist was encouraged that the ACTH was making a difference, and she told us to increase the dose (to the maximum dose) to see if we can get the seizures to resolve. Today is day 3 of that dose. Although the intensity and number of the seizure continue to decrease, Lively is still having them. Neither Pete nor I noticed any yesterday, so we had hoped that they were gone, but Pete saw Lively rolling his eyes again this morning. We go back to the neurologist on Wednesday for another EEG, and if Lively is still having seizures at that point, or if the hypsarrhythmia is still present, we may have to add another anti-seizure medication. As with all his medications, there is the potential for serious side effects, so we are hoping not to have to do this.


Speaking of side effects, one of the big effects of ACTH is increased appetite. Although we started trying to add solid foods to Lively's diet when he was 6 months old, due to his respiratory illness, the seizure development, and the hospitalization, this obviously wasn't something we pushed. Now I think Lively suspects I'm trying to sneak him more medicine when I offer mashed bananas, so he generally refuses anything other than milk. His appetite is steadily increasing, to the point that he now drinks about 2 liters a day. I can't keep up! Thankfully I have quite a lot stored in the freezer, but I'm worried that we may even run out of that. Each time I offer him a bottle, I try to dissolve as much rice cereal as possible in it first, but even with the extra calories, he's insatiable.


Here's a photo of Lively I took this morning as he was laughing and playing with his toys. Each time I see him reach out to grab something, especially with his left hand, I feel both relieved that he has this ability, and terribly frightened that it might not be there tomorrow.

His hands look blurry because he's moving them so quickly as part of his happy dance!