(Then and Now for Chapter 28: The Epilepsy Monitoring Unit)
Going to an Epilepsy Monitoring Unit will get more clues about what is happening in a seizing brain. We probably should have gone sooner, but the chaos with her first neurologist kept us undecided. I think we needed to feel confident about the doctor in charge before moving to this step. What we feared in the beginning was a source of hope at this stage in Rose’s struggles.
We had basically exhausted most drug options by this point. It was time to be surrounded by a trained team of professionals. We were hoping to find the source of seizures during Phase I of EMU. There were other ways to find out what was happening besides just the electrode leads glued to her skull. Rose also had many scans.
Our first experience with Phase I did not give us the information we needed, but guided us toward other tests. At least the EMU clues ruled out many possible causes which had kept me up at night, such as tumors or lesions.
Any patient who has failed many medicines needs this step. Even if you do not get definite causes, possible sources of seizures can be ruled out and better options for medications or treatments may be uncovered. You need the clues from EMU.
An EMU stay is time-consuming and expensive, but so are trips to the ER with broken bones. Your insurance should be encouraged to cover this as a preventative measure.You may need to be a pushy mama bear.