This past year has been a difficult year for Michele. One that we have not hidden but I have not talked about yet. This post will be the place to describe the events of Epilepsy and how that phenomenon affected Michele this past year.
We first noticed the symptoms on Easter day 2011, April 24. We were all in the middle of a countdown to our first trip to Disney World. Michele had a count down app on her iPhone and each day would remind us of the number of days left. On that Easter day there were 132 days remaining.
That afternoon as we were getting dinner ready and expecting family to come over, Michele mentioned that she felt strange at Easter service earlier, she knew she was there but she had no idea what happened. We did not think too much of it at the moment. Later after our Easter dinner guests left, Michele was sitting at the computer and asked a strange question, "What's this countdown to Disney?" I of course thought she was putting me on. and ignored it. She repeated the question with ernest so I followed up with, "What are you talking about?" We had been looking forward to our first trip to Disney with the kids. Michele also had no recollection that we had guests over just an hour earlier. We had the awful realization that Michele was not joking and something serious was wrong! Off to the Emergency room!
The next week Michele was diagnosed with catamenial epilepsy. From our own research we learned that the recurrent "spells" Michele had been having since Andrew was born were termed simple partial epilepsy seizures. Michele's simple partial seizures where in the form of Deja vu and nausea. The worst of them had her in a state of awareness but forced her to pause her current task. Easter 2011 began the first episode of complex partial epilepsy seizure with amnesia. The amnesia events usually followed what is termed an aura, She would loose awareness temporarily and have an amnesia event. Normally the memories came back after about an hour, most of the memories. We are still unsure of why Michele is so much more forgetful now without episodes. She has to take notes for everything. Her initial neurologist had Michele do a week long EEG test using a walk around recorder. She hated the uncomfortableness. After all that the EEG showed nothing abnormal.
A month later it happened again while at Bobby and Michael's 1st Bday party for baby Josh. Michele had a bunch of "spells" throughout the morning, later while sitting down to eat some of Michaels good cooking Michele felt strange and put her head down, when she sat back up she asked, "Where am I?" I answered that we were at Baby Josh's party, Michele responded with, "Who is Josh?" Off to see the Doc again! (Thanks Missy for taking our kids).
The neurologist decided that testing further was too hard to get good results and at this point did not matter much. He started Michele on Kepra. A small dose but said that this was something that Michele needed to take daily from that point forward. All seemed to go well with the medication.
Life was good again. We went to Disney later that summer. All of us were having a good time. It was Thursday (the fifth day in Disney) Michele had woke first and leaned over to ask, "Dan, where are we?" Michele had forgotten to take the Kepra the night before. Fortunately as usual the amnesia only lasted for part of that morning. Michele had recalled most all of our first trip to Disney.
Since then we have seen a catamenial specialist at Johns Hopkins and we are waiting for the specialist and Michele's OB to get together and talk about the next steps in her treatment. This has been frustrating, it seems Docs are working at their own pace, Michele saw the specialist in February and we are still waiting for the docs to exchange information and get back to us. No one is making any promises but Michele and I are of course optimistic.
Update May 2nd:
Got a call from the OB's office and they have scheduled the hysterectomy for May 15th. Michele will need to follow up with the Hopkins doc three months after the surgery. He will start to reduce the Kepra until she is completely off of it. If Michele has any more seizures then she will be on the medicine for the rest of her life. If she doesn't have a seizure then she can remain off of the medicine and the surgery had an impact on the Epilepsy.
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