I have been doing research on Epilepsy and the changes that can occur during puberty. Reagan is only nine, but I know that puberty will be hitting us soon. For some girls, hormone changes mean nothing for epilepsy, for others it could mean several things. Seizures could just go away, or they could become more frequent. That is super comforting!
Not knowing what will happen with my daughter in the coming years!
I am a part of a couple support groups online and I have read that some girls and women have more, uncontrolled seizures once a month as their hormones change. Is this something that I am going to have to start worrying about? I don’t know. On top of the body changes and mood changes, I might have to deal with more seizures. Will this mean we need to increase her medication? Will she need to be on more than one medication at a time? I don’t know. I would like to believe that Reagan will be just fine. That there will be no other changes for her. – I mean if the epilepsy just went away, that would be great!
I am constantly worried about Reagan, even if I don’t realize it.
Something different will happen and I will begin to feel panicked.
Reagan is my early bird. She is normally up by 6:15am. During the summer, she would just go into the playroom and watch TV. Now that school is back in, I don’t allow her to watch TV in the morning, so she has been crawling into bed with me when she wakes up. One day this week, she didn’t come crawl into bed with me. A half hour went by, and it was getting close to the time when we need to get up and get moving for school. My heartrate was beginning to speed up.
I was worried that I was going to walk into her room, and she would be dead.
This seems completely crazy and an unnatural way to think and feel, especially because she only slept 30 minutes longer than normal. However, I have heard of people who have died from epilepsy in their sleep.
It’s called SUDEP: Sudden Unexpected Death in Epilepsy.
As I walked down the hall to her room, I found myself thinking about what I would do if this really happened. Should I have my phone on me so I could call my husband and get him home? So, I could call 911? What would I tell Heidi, how would I handle life after that?
*Spoiler Alert* Reagan was just fine! Just needed a bit more sleep, but she was just about to come get in bed with me.
This is such a difficult way to think, and to feel, but this is my reality. These are the thoughts that are constantly running through my mind… Even if it is in the back of mind, it’s always there.
