Tuesday, May 5, 2009
We just got back from BCCH. Benjamin is still having seizures:( But they can’t give him the steroids as he has a cold and it is too risky to start steroids while he has a cold as the side effects could cause the infection to worsen. So we are starting a new drug called Topiramate. But this drug only has a 15% chance of working. They are continuing the Vigabatrin as it did lessen the seizures. They are going to try both drugs together to see if this will cause the seizures to stop. We also learnt that Benjamin will have to be on medication all his life for these seizures. There is a small chance that they could go away with time but this rarely happens in children with previous brain trauma. There is also the possibility of the seizures turning into another type of seizure. The goal right now is to try to control the seizures with medication. We are feeling a little overwhelmed as there is not a lot known about why infantile spasms start or how the medication even works to control them. We continue this medication for 6 weeks and then have another EEG and meet with the neurologist again.