Shawn's Neurology Appointment

March 18, 2009 at 11:06pm

Well, Shawn and I drove to Phoenix today for his 6 month Neurologic Exam. We arrived a little early because we always have to fill out paperwork since his appointments are 6 months apart. While the receptionist was telling me what to fill out the doctor walked up behind her and asked me how he's doing. I told him, "not so good" and the doctor came out into the lobby (which was empty) to talk to me while I filled out the paperwork. I told him that Shawn has had behavior changes and has been more aggressive and agitated. That he is not sleeping well at night. That his teacher has noticed some regression in his ability to write his name and that he has regressed in his toileting during the day. The doctor then took Shawn and told me to come back when I finished the paperwork.

When I finished and went back the doctor was in head spinning speed mode. He told me that for most children with Electrical status epilepticus during slow-wave sleep (ESESS) they monitor them in the Epilepsy Monitoring Unity (EMU) to verify the condition, then they put the child on HIGH dose tranquilizers for 10 days to try to reset the brain waves then they monitor them in the EMU again. But because Shawn has abnormal brain waves all the time this treatment may or may not work.

Since it has been a year and 8 months since he was last monitored they want to monitor him again and verify if he still has ESESS, then he will be on tranquilizers for 10 days and he won't be able to go to school and will likely require near total care since he won't be able to even toilet independently. The doctor left the room almost immediately after telling me this to see how soon he could get Shawn into the EMU. He scheduled Shawn for April 22 and put him on the on call list in case of an earlier cancellation.

When the doctor was out of the room I sent Jim a text to say that we were going to end up in the EMU again and Jim called when the doctor came back in the room so I put him on speaker and so he would know when the doctor wanted to hospitalize Shawn, since he has to have a parent with him at all times while in the EMU. (Last time he was there we both took the time off and took turns sitting in the hospital and sleeping at a nearby hotel).

After the appointment, I sat in the parking garage for a while and cried trying to get through enough to drive. Shawn was sitting in the back with his Tag reading Spongebob to him. When I finally calmed down enough to drive, Shawn told me "Don't cry Mommy."

It was a very long drive home. Shawn played with his Tag reading different books and I thought about how they warned us he would have a seizure during the night that would cause him to regress. And I thought I'm not ready for this. I'm not ready to lose him.

Shawn December 2005

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