The Summer of Steroids, Pt. 1

The Summer of Steroids (July-September 2004), as we now officially call it, began before we were ready to admit it. Soren had been having his partial complex seizures for 3 months when he started doing something new. Once again it was my sister who identified what was going on. When she was in med school, she learned about a kind of seizure known at that time as Salaam Seizures, because the child having them looks like they are bowing forward in prayer. She had never seen one because they are quite rare. My sister told us we would have to see the neurologist right away because this kind of seizure is treated totally differently.

We were all going to be heading to Maui for a much needed vacation/10 year anniversary in 2 days. So we called in a favor and got an EEG done at my childhood neurologist's office (thanks, Andrea!). On the EEG she was looking for something called hypsarythmia (a particular pattern in the brain waves). She didn't see this and so we went on our vacation. Unfortunately, Soren continued these strange movements. So when we returned, we had another EEG done and, sure enough, the hypsarythmia was now present. It was confirmed that Soren had Infantile Spasms (the new term for such seizures).

The next decision was treatment. The popular treatment was a steroid called ACTH, but with ACTH came some very bad side effects. ACTH breaks down the immune system, so you have to be very careful about not getting sick. You also have to be careful about how long you are on ACTH because the longer you're on it, the more susceptible to illness you become. I think the longest they recommend a child to be on ACTH is 3 months. There aren't many cases of death reported, but there are some, which made us nervous. The second kind of treatment is a drug called Vigabatrin. It's currently only available in the US at one pharmacy in New York. Otherwise you have to get it from Canada or Mexico. Its side effects are, with prolonged use, impaired visual fields. In other words, partial blindness.

Because of the extremes of these drugs, we wanted to make sure we were making the right choice for Soren's seizures. Andrea got us in to see the team at UCLA who were doing the most current work on Infantile Spasms and Vigabatrin. In early July, Soren was admitted into the hospital for 3 days for a prolonged EEG/video telemetry. This means that while Soren had electrodes all over his head recording the activity inside his head, he also had a video camera taping what was going on on the outside. This way when he had a seizure, they could match the inner activity with the outer reaction. Through this test, it was again confirmed that Soren had Infantile Spasms.

Now the debate of treatment...