Hello all. Jenn here.
It has taken a while for me to post about my daughters 6th seizure….probably because it had been the hardest to cope with.
It was Friday, July 21st. The first day if summer. We had a fun day! We spent time with some new friends playing in their bouncy house, playing in the sprinkler, and having a blast!
I don’t remember everything we did that day. But when my husband got off from work we had planned to meet him at Lowe’s to get stuff for the house. (We are remodeling)
Well about an hour before he got off, my daughter suddenly had a fever. She was acting completely normal, but she had a temp of 101.2. I naturally started to panic. None of her past seizures had come after a fever, but a seizure following a fever is a common thing and since she is epileptic and this was the first fever she had since this all started I was panicked. I texted my husband and told him she had a fever and we were going to the drug store. I got there and spoke to the pharmacist to see what she could take. The pharmacist said she couldn’t help because she wasn’t comfortable recommending anything and I would have to call her neurologist. Well, it was after 5 on a Friday so I had to call and leave a message for the answering service to page the doc and have him call me.
I left Rite Aid and went to the church building to get my class stuff because I had forgotten it….I forget a lot of things lately. When we got there I texted my sis in law and my best friend and told them what was going on and to please pray because I was upset and didn’t know what was going to happen. Not long after getting there the on call doc returned my call and told me what medicines I could give that wouldn’t affect the seizure medicine.
So we bought that and I gave it to my daughter right when we got in the truck. Then we went home. By the time we got home she no longer had a fever and was her normal happy self. (This all happened in a span of probably 40 minutes-we live close to the building and the drug store). I just figured it was a weird thing that happened. Her temp was normal and she was completely fine.
Once home I don’t remember everything we did. My husband called or texted and told me what time to meet him. When it was time to leave I sent my daughter to get her shoes. As she was going down the hall I heard a “thud”.
I looked and she was laying in the hallway on her stomach with her face and arms up….I naturally panicked. I started to call out to her….falling is not unusual for her…but before I got her name out I heard the unmistakable unforgettable sound she makes during a seizure.
I ran to her and rolled her to get her on her side. It was something I will never forget no matter how hard I try. When she fell she busted her lip and hit her nose. So she had blood running from her nose and mouth. It was one if the scariest moment of my life, words can not explain what I felt watching her have a seizure and watching her lips turn blue while blood was running out of her mouth and pooling on the floor.
I sat there waiting for the seizure to end and singing to her…..while trying to keep myself together. When it was over she just cried. I held her and tried everything to console her, but she just cried and cried. I called my husband who rushed home. She was having some moments during crying where she would stop crying and make the sound she makes during a seizure and some of the jerking movements she makes during a seizure, this was the first time that had happened. So I called a doctor from church and asked his advice, he said if it continued an hour after the seizure to go to the ER. The doctors at church have been such a blessing.
She was still just crying when my husband got home. We sang to her and consoled her until she finally stopped crying. She asked to be held while I walked around so we walked her around the house. Then she asked to sit on the couch and not long after she fell asleep.
The next morning when she woke up she had a bruise between her nose and upper lip, a bruise on her lip, a cut on the inside of her bottom lip, and 2 of her teeth were loose.
We took her out that day for ice cream and went to see Monsters University, but the only showing at that time was 3D and call us over protective but we decided against that for now. So then we went to the playground.
After this seizure the doctor upped her medicine dosage and moved our follow up appt from August to July.
This was the first time she had gotten hurt during a seizure. This was the first time I was alone during a seizure. It was very hard to cope with and get past.
I think the hardest things I have come to realize during the past few months is that you can’t unsee your child having a seizure and you can’t unhear them having a seizure, and you have no control over their seizures. When I close my eyes to try to rest the image of her having a seizure finds its way into my head, I try to replace that with an image if her laughing. My advice is to pray, a lot! I pray for them to stop, but I also pray for her to not get hurt during a seizure. Her getting hurt has been very hard for us. But you also have to lean on others for support. I don’t know how I would have handled this without my husband, my family, my friends, and my amazing church family. We have had some amazing people constantly praying for us, coming to visit us, checking on us, sending us cards, and letting us know to call them anytime day or night.
If you ever have to deal with this I hope you can take my advice and lean on God and others, you can’t get through it alone.
Bye for now,