We have had a lot of ups and downs this week, although that is starting to become par for the course around here. Will continues to have an average of 5-6 clusters of seizures per day. Some days are better than others. This morning he had one in the bathtub, and although obviously we would never leave a 20 month old unattended in the tub with or without IS, it was pretty scary to watch his head plunge forward into the water.
As expected, the Keppra has done nothing to lessen Will's seizures, and Will's doctors aren't very optimistic that the ACTH will work either. We find ourselves already trying to evaluate the next steps, even though we haven't even started this round of treatment yet. We met with a pediatric opthalmologist on Tuesday, who explained to us the very real risks to Will's vision from Vigabatrin (the next drug option if ACTH fails) as well as from brain surgery because of the location of the optical nerve. There are no easy solutions here, and the options we are given are forcing us to make choices between the lesser of 2 evils. We simply don't have an option that isn't without significant risk, although when given the choice between potential damage to Will's vision (or possible brain atrophy from ACTH) compared to the strong likelihood of severe mental retardation if we can't get the seizures under control, the answer becomes pretty clear. We have no choice but to do everything possible to stop the seizures. When we first read about so many of the treatment options for IS, especially ACTH, our initial reaction was "no, way, not our child", but as we come to grips with the seriousness of Will's condition, seemingly impossible choices become easier to make than you might think.
We can honestly say that we are hanging on by an absolute thread, but somehow we are still holding it together despite it all. Life keeps going whether you feel like you want to continue on the ride or not...our children need us to maintain a normal, happy life for them, we have jobs that demand our attention and bills to pay. Sometimes we amaze ourselves by talking to someone about Will's condition all matter-of-factly as if we are completely in control. Other days, it is hard to even put one foot in front of the other. We met with a specialist in pediatric neurodevelopmental disabilities this week who is going to help coordinate Will's therapies, and she said "This is your personal tsunami" - she clearly understood what we are going through.
|Will wanted to type this blog update himself|