Here We Go Again

Our next round with epilepsy happened in January of 2020 and it knocked us for a loop.

January 24th was the day Rach had her first tonic-clonic seizure. 

We knew that her epilepsy could come back, especially around puberty, but we didn't expect it to show up quite like this. I guess we all just thought if she started having seizures again that they would just be like the ones she had when she was little, and we just weren't expecting what happened, but I guess nobody expects the first tonic-clonic.

Rach really hadn't been feeling well that day but we had all been fighting off a virus so it didn't seem strange. We all pretty much just kind of rested that day but that afternoon Rach started feeling worse. She started telling me that she felt scared and it seemed like something bad was about to happen. 

I was checking her temp which was normal but then she had a myoclonic seizure. After that one, she started getting really nauseous and had another myoclonic. 

I knew something wasn't right so I got her on her bed and within minutes she started having a cluster of them just back to back. I had seen Rach have a small myoclonic clusters when she was little but they always stopped and never progressed so I wasn't thinking about a tonic-clonic. 

I just knew something was wrong and I needed to get her to the hospital because it was late Friday afternoon and the doctor wasn't in the office. I had my husband and other daughter, Beth, come into her room so I could get my stuff to leave and I hadn't been out of the room but a minute when Beth came running in saying that her dad said Rach was gone. 

I rushed in the room and saw her lying very still and blue around her mouth so I see why my husband thought what he did. 

Now let me explain a little about that right quick. My husband doesn't understand epilepsy at all and never wanted to learn more about it. He was brought up in a family that doesn't "claim" illness, especially something like epilepsy. To his parents epilepsy is something to be ashamed of and I will go further into that at another time. 

My husband isn't a bad man, just brought up by really closed minded people. Thankfully my husband has seen just how serious epilepsy is now, that’s it’s not something to be ashamed of or to be prayed out of someone, so progress has been made. He still doesn’t know as much as he needs to but baby steps have been made.

Back to the main story. Like I said, when I saw her like that and what was being said at first I panicked but then as soon as that hit me I realized no… she’s having a tonic-clonic seizure. I told them to call 911 because I was scared, it was her first one ever, and I had lost all sense of time. 

I turned her on her side and blood/drool started coming out. At first it scared me again but then I remembered I had read that it is normal because she had probably bitten her cheek or something. 

It wasn’t long till the seizure ended and the first responders were there. She was a little disoriented but not as bad as some people, at least that’s what they told me. She was able to walk to the ambulance with some assistance so that made me feel better. 

We had to go to our local hospital and let’s just say that it’s not a great place to have to go. Anyways they ran blood work, drug test, pregnancy test, and finally a CT scan. I told them her history of seizures and what she was diagnosed with before, but they didn’t want to do anything. 

I was worried because we live so far away from town, it was the weekend, and what if it happened again but more severe. I asked them to either admit her or at least send us home with something. 

They went ahead and gave her a Diazepam and then a prescription for rectal Diazepam. So after a very long day we headed back to the house, and as soon as we arrived home she had to throw up, but at least no more seizures for the night.

The Diazepam they gave her really worked because she didn’t have any seizure activity that we saw, or she felt, until Sunday and then she started having myoclonic seizures again. These were short, only lasting like 2-4 seconds, but they scared her and I can’t lie they made me really nervous. 

Monday morning I called the doctor and they said they couldn’t get us in until the next week, but Rach really had a hard day so I called back that afternoon and finally got the nurse and explained to her what had happened. She managed to get us in on Wednesday. Rach continued to have a lot of myoclonic seizures but thankfully they didn't turn into anything else.

The trip to the doc wasn’t fun because she was having a lot that day, was really nauseous, and just not feeling well at all. After I explained to the doctor everything that had happened, he asked a lot more questions, and I showed him a video I took of the seizure that I could catch.

He diagnosed Rach with Juvenile Myoclonic Epilepsy and started her on Depakote again, since it worked well for her when she was little. He also prescribed a small dose of Ativan for when the myoclonic seizures started clustering together. Thankfully she didn't have to take that very often.

The first month or so, we slowly raised her dose of Depakote and she was feeling better and better. By the end of February she was starting to see a seizure free day here and there. From mid March until mid May she was seizure free! YAY!!! 

We were hopeful it would stay that way, but it didn't. She started having very small myoclonic seizures again but they didn't hardly cluster at all and she was only having around 10-15 a month. We waited until August to raise her dose of Depakote again and that put her up to 875mg a day. 

She still isn't seizure free but we made an appointment with an epilepsy specialist to see if we can figure out why.

I’ll get more into our journey during the next few posts, there’s so much to share that I have to break it up. But I want to document our entire journey, no matter how hard some parts of it might be to talk about, like today’s story. Because if our journey can help even one person, then this blog has done what I wanted it to.

And as our journey is still very much ongoing, I’ll make sure to try and update every step of the way!