We're home--all of us are home!!!! Evan was released from the hospital today around lunchtime and was so happy to be home! He immediately started running around the house and playing with the toys we didn't bring to the hospital.
Dr. Pearl thinks he got enough seizures on tape even though we missed the "whopper"--Evan saved that one for us at home tonight at the dinner table. Oh well.
So, we'll get an official report with the results in a few weeks, but from the preliminary information it looks like all the seizures are starting in the same place. Since there are three tubers on his brain that are possible suspects, it's good news to hear that it appears only one is the culprit. This could mean that he is a very good surgical candidate, with extremely optimistic results. This by no means indicates he's going to have brain surgery, but if that's our only option, it could be a good one.
Up until now, one of our big concerns involved a tuber that appears to sit right on his motor strip. If that one is causing the seizures (which it doesn't appear to be), surgery is daunting because the possible deficit could be pretty major--never being able to make a fist and having an impaired gait. It's huge to hear they don't think that's the case. We don't want to jump at that conclusion too much though because an EEG is only a snapshot in time, and all we really know is that in 5 days all the seizures seemed to originate in the same place.
Our next step is to go to Detroit to have an AMT PET scan done. This very specialized test is able to distinguish between epileptogenic and non-epileptogenic tubers in Tuberous Sclerosis patients and would give confirmation of the EEG findings. So we'll be calling next week to schedule that test.
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1 comment:
Thanks James, we're all so glad to be done with that test and back home!
The other two blogs were really just for the trip, so I don't think we'll be updating them anymore.
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