Six Months Seizure Free!

November is Epilepsy Awareness Month. This is an illness that we have been dealing with for over nine years now. I will usually post something on Instagram and Facebook about it. I post a few informational pictures along with pictures of Reagan through the years having EEGs done. For me, it tends to be a happy, exciting time because I post that it has been 5,6,7 years since Reagan’s last seizure. That all changed earlier this year.

It has been six months exactly since Reagan’s last seizure

That is really hard to deal with. It breaks my heart to even type that out. I should be getting excited to be coming up on 8 years seizure free, but we are working on little milestones instead.

I blame myself for Reagan having to start the clock over. I try not to have regrets as a parent, everything has taught me something. If I could go back and change anything, this would be it.

It had been over seven years since Reagan had a seizure, so her neurologist ordered another EEG to be done. We have done hour long EEGs and 24-hour EEGs in the past. This time, he ordered a sleep deprived hour long one. Mitch kept Reagan up until midnight the night before the test, and then I woke her up at 4am. We made it as special/fun as possible. I took her to Starbucks right as it was opening, and we had a coffee/hot chocolate date before driving to San Diego.

The test went fine, and within a few days I got an email stating that everything looked normal and was given a weaning of medication schedule.

 I emailed her doctor back asking about a 24-hour EEG. In the past, her short EEGs always looked normal, it was the 24-hour ones that always showed the seizure activity. He told me that he could put in an order for a 24 hour one, and if that one looked normal, that was the best that he could do as far as seeing if the epilepsy was  gone, so to speak.

I went back and forth a lot with this. Reagan HATES having EEGs done. Something about it frightens her. Do I trust the EEG reading and just start weaning her? Do I have her go through another test, but this time she would have to deal with it longer? What if that one came back clean, and I put her through all that for nothing? What if the longer EEG shows seizure activity? Do I even want her to come off the medication? It’s working, and she is doing okay on it…

I took a few things as “signs” that she was going to be okay.

We get her medication every three months. When it needed to be refilled, they were only able to give us a one-month supply and told us that when they got it back in stock, we would be able to get the rest. We would basically be at the end of the weaning when she ran out of medicine. This was back in March, so everything started shutting down. I was told that they wouldn’t be able to schedule Reagan for a 24-hour EEG unless it was an emergency, and that fact that she was doing fine meant she wasn’t top on the list for scheduling. School had been closed by this time. The timeline for when school thought they might be able to open again went along the same timeline as how long it would take for Reagan to come off her medication. I took comfort in knowing that I was going to be with her everyday for the six weeks that it would take.

So, we did it, we just took the plunge!

The six weeks went by with no incident. Reagan actually thought it was weird to be taking less and less medicine every couple weeks.

May 1, 2020 was the first and only day that Reagan has gone without taking seizure medication since she was eight months old. We celebrated by having Olive Garden for dinner, and ice cream for dessert. That day was all about Reagan!

May 2, 2020 was a Saturday. We were still on “lockdown” due to Covid-19, so like a lot of people, we were working on house projects. Mitch had left to go get more supplies from Home Depot; I was busy paining in Reagan’s room. The girls were busy playing with Play Doh. They had asked if they could do something else, and I remember telling them that I wanted them to take out their bathroom trash first. I heard Heidi yell to Reagan asking her if she was coming? Reagan is my rule follower, she doesn’t ever want me to be upset with her, so the fact that Heidi was yelling to her didn’t sit right with me. I went to go see what was going on, and that’s when my heart broke.

I found Reagan on the floor half in the playroom, half in the hall.

I knew before I even got to her that she had a seizure. She was pale and unresponsive to my voice. She was making noises, she was breathing. She would be okay…

I went into auto pilot. There wasn’t time for me to freak out or meltdown. My baby needed me. I got onto the floor with her and I saw blood in her hair. First thing I did was check to see if her head was bleeding. It wasn’t. I figured that she bit her tongue and moved on. Next, I needed to make sure that Heidi was ok, and I needed to get in touch with Mitch. I reassured Heidi that Reagan was going to be fine. I asked her to go get me a couple of towels and a pillow for Reagan. I tried to call Mitch, but the signal was horrible and wouldn’t connect so I sent him a text telling him that Reagan had a seizure.

I sat with Reagan, in the hall as she was trying to come around. I could see the wheels turning in her head, but she couldn’t communicate. I kept reassuring her that she was ok, and that when daddy got home, he would move her onto the couch. I was doing all this, while also trying to keep Heidi calm. Heidi was 6 years old and has never seen anything like this.

We spent that entire day tending to Reagan. She slept a lot; she threw up several times. It took her HOURS to really, truly come out of it. She has lost that whole day. We have asked her about what she remembers, and it’s basically nothing.

I have relived that day every day since it happened. I feel responsible.

 When it comes down to it, everything was my choice.

 I chose to not go ahead with the longer EEG. It was my decision to start weaning her. Why wasn’t I watching her more closely on that day? Why did I leave her alone? Why wasn’t I there? Why did my baby have to go through that all alone? I don’t know if I will ever forgive myself.

I have learned from it though. I will always push for more tests, I will make sure I do everything in my power to make sure my kids are okay.