In Search of a Crystal Ball

Will at 3 months, long before we had ever heard of Infantile Spasms

This week we traveled to Baltimore to meet with the head of the Johns Hopkins pediatric epilepsy department to get another opinion prior to Will's surgery.  It was an exhausting few days, but we actually were able to enjoy a few highlights of the city, and had a good appointment as well.  We did ask him if he had considered practicing in Aruba or maybe Hawaii to give us an exotic destination to travel to, and his fellow said he would much prefer that as well.  We might be on to something, although we must admit Baltimore is a very nice, clean city with a really awesome harbor and great historic architecture.

Dr. Baltimore's opinion (we don't like to use their real names on the blog) was somewhat in line with the opinions that we already have.  Surprisingly, he said that he can see a subtle left temporal lobe focal point for Will's seizures on the EEG, but felt that Will's MRI looked clear and he did not see any malformation.  This is a little different from what the neurologist in Detroit said, as Dr. Detroit said he could clearly see a malformation in the left temporal lobe on the MRI images, but he was unable to detect a focus on the EEG.  Of course, Will's doctors at the Clinic have said that they see a focus on the EEG pattern as well as a malformation on the MRI images in the left temporal lobe, but all doctors agree that whatever is there is very subtle and not glaringly obvious.

Essentially, we have three of the top specialists in the world for Infantile Spasms, all stating that they see some type of abnormality in Will's left temporal lobe, but they differ in how they view the abnormality.  All agree that something just doesn't seem right in that area of the brain.  This makes sense to us, as the left temporal lobe is the area of the brain responsible for speech, which is the most pronounced area of Will's developmental delays.

Seizures can be generalized (coming from all over the brain) or they can be focal (coming from a specific location in the brain).  However, sometimes it can be hard to detect a seizure's focus, because often although the abnormal brain activity may originate in one area of the brain, the abnormal activity spreads throughout the entire brain as a result.  Dr. Baltimore said that even though Will has significant delays, Will is doing very well when compared with other IS children his age, a blessing that we are thankful for each and every day.  Many infantile spasms kids cannot walk, sit up, or even hold up their heads.  To him, he felt that this would indicate that Will has a small structural brain abnormality that is causing Will's seizures.  In other words, if the seizures were generalized and coming from all areas of the brain, Will would not be doing as well as he is because that would indicate that there are abnormalities throughout.  In his opinion, it is much more likely that there is some small area that is the focus of Will's seizures, which appears to be the left temporal lobe.  Dr. Detroit essentially told us the same thing...he said that he would be willing to bet that Will has a focal point to his seizures, because Will is very highly functioning when you consider his diagnosis and his EEG pattern.  However, as you may recall, Dr. Detroit recommended holding off on surgery until a more clear focus point was seen on EEG.

Dr. Baltimore agreed with the Clinic that surgery to remove the left temporal lobe would be a good next step for Will, and he also agreed that we should not remove the occipital and parietal lobes at this time if we can avoid it.  In his opinion it was a question of timing, as to when we felt ready to proceed with surgery, or whether we want to try additional medications or the Ketogenic Diet for a longer time period.  Since he is in charge of the Ketogenic Diet program at Johns Hopkins, the hospital that pioneered the diet, he said that he generally would keep a child on the diet for a while longer (6 months or even a year) before proceeding to surgery.  However, he felt that while we may be able to modify the Ketogenic Diet to attempt to further reduce Will's seizures, he did not feel that Will is likely achieve seizure freedom from diet alone.

Dr. Baltimore again confirmed that the Clinic has been very thorough in the battery of tests that Will has undergone thus far, and felt that we have tried virtually everything he would recommend as well.  He also agreed with the approach outlined by the Clinic as to pre-surgical testing, which was comforting.

All in all, it was a very good appointment and we are glad that we went.  If we combine the opinions of all of the neurologists we have seen, even though they are not all in complete agreement, we actually feel we are making a well informed and appropriate decision to have surgery to remove Will's left temporal lobe.  Regardless, we have a lot to think about in the coming month, and we will continue to explore and research other options to feel confident we are making the right choice.  We just wish we could find a crystal ball that would tell us if it will work.