May 21, 2006

Tuberous Sclerosis Clinic

We took Evan to a Tuberous Sclerosis Clinic on Saturday where we met with several doctors for about 2 1/2 hours. They take a multi-disciplinary approach to managing TS and it was interesting to talk to experts in different medical specialities.

Evan still doesn't have a concrete diagnosis of Tuberous Sclerosis, and it will require more testing to come to a firm diagnosis. The tests will either confirm that he has it or leave us all wondering if it's TS (which is the most likely diagnosis) or if (although rare) he had multiple brain malformations in utero.

We have begun the process of switching Evan off Keppra and onto Lamictal. The seizures didn't stop as he maxed out on the drug, so it is clearly failing to control his seizures. This will be the third drug we are trying and statistically speaking, there is only about a 5% chance it will work, so I wouldn't take those odds to Vegas, but it's the best we've got for the time being. At least there is a chance it'll work, and that's better than where we are with Keppra.

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