The Good Doctor

Early in my research about infantile spasms, one name dominated all the expert quotes and research and cutting-edge technology related to this rare disorder. Dr. C from Detroit. The pioneer of a method of mapping the actual "hot spots" in the brain where seizures originate through a combination of PET scans and EEGs in preparation for surgery, among other equally impressive things. He is a rock star in the world of pediatric neurology, like that recent Intel commercial kind of rock star.

And from what I'd heard repeatedly from other parents of IS children, Dr. C is a rather approachable guy. Legend has it that he even responds to all emails regarding infantile spasms, even if your child is not currently under his care.

On a whim a couple of nights ago, I decided to test this and email him. In my note, I briefly described Ella's recent history and then asked seven questions (I aim high:). He had responded before 7am the next morning and answered every single question!

I have such peace of mind after corresponding with him.

For starters, he approves of our current treatment plan--that is, weaning the ACTH because Ella has been seizure-free for two weeks. He also gave a rough outline of where we might go from here if the seizures returned. If the ACTH failed to keep the seizures gone, we would move on to a drug called sabril. (It is not approved in the US due to a pesky side effect of loss of peripheral vision. However, it's a highly effective drug that may work to reduce the possibility of gross motor and other developmental delays, so I think a little vision loss would be manageable when you consider the alternatives.) And if Ella continued to have seizures after both of these medicines were attempted, then she would potentially be a good candidate for brain surgery (specifically a cortical resection wherein they remove the part of the brain that is triggering the seizure activity) since she does have a malformation.

As scary as it seems when faced with the possibility of brain surgery, I'm almost relieved to learn that there are other treatments available if the medications fail. But I like that Dr. C is not pushing for surgery already, especially since surgeons have a tendency to rush to cut without considering other less invasive therapies. He says we should give the medication a chance to work and get her a little older if possible. He did say if there were a worsening developmental delay, that surgery is considered earlier.

He said he'd be happy to see Ella if she was not doing well in the future, and then signed off with, "Good luck, HC."

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I'm incredibly exhausted right now. There's more to be said, but I can't keep my eyes open so I'll finish the story as soon as I can.

♦