Just When You Think We’re Getting Close

Today was another difficult day. Today we found out that Jacob’s EEG showed “
epileptiform activity”. Not good.

Why did Jacob even have this EEG you ask? That’s potentially even more distressing than the finding itself. You see we’ve been looking for local Canadian doctors to help us put together a protocol to try out this experimental drug on Jacob. One of the local docs asked that we first get a baseline EEG before we meet. We never thought anything bad would show up.

Jacob may be experiencing small seizures which could potentially have a significant impact on his cognitive development. This will also make it harder to get a local doctor to risk helping Jacob with the experimental treatment for fear of triggering amplifying seizures. While there is absolutely no indication that this drug causes seizures, other more widely known drugs such as 4AP, are known to cause seizures.

Obviously, we’re very concerned about Jacob especially because he’s been having a very difficult time lately. Something has been bothering him for the past two months or so. We’re not quite sure what it is, but it seems like he’s in pain or uncomfortable. We were even wondering if he’s experiencing something called “startle seizures”. Perhaps this is what’s been making the past couple months so difficult.

We’re not going to give up. If we need to treat Jacob with anti-seizure medication, then we’ll do it. In fact, there is a theoretical possibility that some anti-seizure meds may help protect the oligodendrocytes from apoptosis which may reduce the severity of Jacob’s disease and its progression. There’s still so much to do to help Jacob….