Beth in kindergarten around her diagnosis
This is part of a month-long series that my teen daughter and I are writing about her life and learning to live with epilepsy. To start at the beginning, click here.
Looking back, it’s easy to see some warning signs that something wasn’t right with Beth before she had her first seizure. We’re sure that some symptoms were related to epilepsy and just guessing with others, but my gut tells me that her brain was stressed before the first seizure.
As a baby, Beth didn’t sleep. And I mean, she really didn’t sleep much at all. Some babies wake up 3-4 times every night and that’s pretty normal. But Beth would wake up 7-10 times a night a lot of the time. She would sleep for 30-60 minutes and then wake up crying. She didn’t sleep through the night until she was 26 months old.
It was so different than our other two kids and we never understood it. She was very, very attached to me but even co-sleeping didn’t help her sleep better. She just cried all night. Until she hit 26 months old and it was as if a switch went off and she slept for about 7 hours every night. It wasn’t nearly as much as our other kids but it was a huge improvement.
I’ve always wondered if she was having seizures at night or perhaps suffering from headaches that young.
When she started preschool, she loved it! Loved everything about it and probably had the best preschool experience of all of our kids. Except for naptime. She had a lot of anxiety about naptime and would request to go to the bathroom all the time. We even had her checked for bladder infections and never found anything. But something about naptime made her very, very anxious.
Another one of those things that make me wonder now if it was related to either migraines or seizures.
And then the summer before kindergarten, she had even more trouble napping and complained on and off of a headache a lot. On vacation that summer, family members commented that she didn’t look like herself and that she was spaced out and pale. We were planning on making a doctor’s appointment to see what was causing the headaches before she started kindergarten in August.
But we never got to it because she had a tonic-clonic seizure. When I look back, it’s very clear that something had been going on with her brain that entire summer.
I’m a bit embarrassed to link to these old blog posts I wrote at the time but I’m going to anyway. At that point, I was writing my blog solely for a group of scrapbooking friends and never really intended for anyone else to read it. The posts are emotional and poorly written but they’re part of her story so I’m going to include them here. As you’ll see, there was a misdiagnosis of absence seizures in the beginning and other things that are different now. We’ll be back with the rest of her diagnosis in the next post.
One foot in front of the other
*If you’d like to read all of our 31 Days posts about living with epilepsy, click on the button on the sidebar or start here. And if you’re wondering what the heck is going on and who Beth is, click here. 🙂
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