Cerebral Palsy, Epilepsy, Health, Our Son

Frack They’re Back

Sigh. Well, there is good news and not so good news. The good news is that my very good friend Darryl in Thailand emailed me my Seizure Saga post! Wahoo. I suppose I should subscribe to emails of my posts as well for back up. I am so thankful for this as such a huge effort was put into writing it AND because it will serve as a reference. The bad news is that we haven’t seen that last of seizures for Sebastian yet.

Friday night, after Sebastian fell asleep, he had a small partial seizure, which lasted about a minute. It woke him up and then he went back to sleep easily. Ten minutes later he started to have another seizure, this time just in his face, then it moved to his left side. After ten minutes we got in the car and headed to the hospital, per instructions from his neurologist. Friday night Emergency. Fourteen years to the day we were in Emergency for my brother. Imagine the irony.

Once Sebastian arrived and was placed on the bed, a swarm of four nurses and a doctor came over and searched for the best place to draw blood and get the IV. He has a few pokes in each arm and one hand. The seizure stopped once they started to take his blood pressure. He was given Ativan, put on oxygen and we waited. The doctor contacted our neurologist and we were given a prescription for keppra, which my mom went to retrieve from the pharmacy in order to get liquid form. Otherwise they were going to shave off the amount needed for Sebastian (80cc) from a 500cc pill. Um, no thanks. We’d like to be a bit more accurate. Sebastian was connected to lots of wires and we heard the familiar beeps from the NICU days whenever the leads popped off or loosened. Although he had a lot of medicine in his body and he was exhausted he wasn’t able to fall asleep until midnight. We went home a bit after 1am and thankfully had a pretty good night rest. I wonder when I’m going to get to stay up that late for FUN.

Sebastian is now on trileptal and keppra as we ween him off trileptal. So far he’s very sleepy after taking the medicine, taking solid naps and sleeping through the night. The latter two are good! He’s also a bit more emotional, easily saddened and even throwing some tantrums. Thankfully he didn’t have any seizures yesterday.

We will connect with neurologist tomorrow and take it from there. One day at a time.

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4 thoughts on “Frack They’re Back”

  1. Has anyone talked to you about why his trileptal stopped working for him? Our 14 month old is on trileptal and I’m curious if there is an age/weight concern.

    Love your blog!

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  2. Hi, thanks! Trileptal is new for us, only just been on it for about three weeks, so I guess it’s just not the right medicine for him. We will talk to/see his neurologist this week…

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  3. Oh Kara…. I so wish I could give you a real hug. I’m sorry to hear about Seb’s seizures. Loving and thinking of you lots and hope we get to catch up soon. Send me your number in Michigan; weekends and Fridays are usually the best times for me to talk.

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  4. I am sorry to hear about Sebastian’s seizures, they really are horrible and terrifying.
    I did notice you are coming to Toronto soon, when you have time give me the details.

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