Nothing more scary and heartbreaking..

I’ve never been more happy that I wasn’t able to buy something. I decided to buy a better camera and purchase a Canon 5D Mark II or III. I found a Mark II on Amazon and bought it, only for my order to be canceled by the seller an hour later. Frustrated, I emailed to find out why and got a response email that I had to let them know if I wanted it, and then “Amazon” would send me an invoice. If that was the deal, they should have just fulfilled the order when I placed it. This had red flags all over it, so I decided I wasn’t about to get scammed. So, no camera.

But that is OKAY! Because on Sunday, we wound up in the ER after Colleen had a seizure. How do you describe the moment of having to watch your child have a tonic-clonic seizure (the older term is grand mal—its the type you generally think of with stiff limbs and shaking.)? I felt helpless and my heart broke. Why can’t I be the one to bear this burden? We immediately started timing it. Seizures have the horrible ability to feel like they’ve lasted forever and yet only a few seconds have passed. After two minutes, we gave her the rescue med Diazapam and waited another minute for it to take affect. To me, she wasn’t breathing well so we called 911. When they came, her seizure had stopped and she was very weak.

We were in the ER for about 3 hours total, where they checked her over to make sure there wasn’t an underlying cause like infection or dehydration. They also checked her keppra level, which came back good. So, there wasn’t a lot they could do. We would have had to wait even longer to see the pediatric neurologist, but since Colleen was back to her self mostly, we were discharged to follow-up with her neurologist.

Her keppra dose has since been increased, but last night she had another seizure. This looked similar to her previous seizures, but her jaw was twitching. I don’t think this was a tonic-clonic. So the reason I’m extremely glad I didn’t just drop a ton of money on a camera is that this week I’ve been researching something to monitor her while she sleeps. Colleen always sleeps on her stomach and I cannot tell you how terrified I am of her having a seizure while she sleeps. After a lot of searching the internet and talking with her neurologist, we ordered the SAMi3 sleep activity monitor. It’s a camera unit that should be able to detect and alert to jerking movement. I’m really hoping this will help provide some peace of mind while sleeping. Colleen is also supposed to be getting her Embrace watch, which at the moment, isn’t supposed to ship until September. But as I was searching for monitors, I received an email for clinical trials of the watch, so I signed her up.

Sorry this post was all over the place.. I’m just terrified for Colleen. The care between Syracuse and Rochester is completely different, and it doesn’t make me happy that we’ve gone years without seeing a seizure to having two in a week. Is it because she’s growing or is it because of her medications? I don’t know, which I why we’re seeking a second opinion in Boston. I just want to be sure we’re doing the best and everything we can so that she can thrive..

For information on what to do during a seizure, please read here.


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