• Tuesday, April 30

Nora had a good day today. She may have had two episodes but they were so slight, we’re not 100% sure they were episodes. They probably were.

We had a good visit with Duke Neurology today; though they would have tried a different course to stop the seizures, they confirmed that UNC’s treatment plan is valid and that there’s an argument in the neurology world right now about the right first step.

The neurologist took a look at Nora’s MRI, and said that her first thought was not Tuberous Sclerosis; though we’re still waiting for the genetic tests that will be more definitive, she would expect to see other signs of TS that just aren’t present Nora’s MRI. That doesn’t mean they won’t develop, and it does mean that we still have a very wide range of possibilities.

We still have the appointment with UNC on Monday. If the seizures are still occurring, and based on the results of Monday’s EEG, we’ll need to make a decision on the next medicine to try. The likely candidate is ACTH and / or an anti-epeleptic drug.

Starting ACTH would require a 3-4 day stay in the hospital; lots of potential side-effects that they’d want to monitor for during her first few days on the drug. So that sounds fun.

Join me in rooting for the steroids to do their thing. Let’s Go Steroids Clap Clap Clap-Clap-Clap.

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