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by on January 22, 2011

Over these past few days we have seen some changes to her seizure pattern. 

Up until recently, her seizures have been minor, relatively short and somehow explainable:  bad position, irregular movement, physical straining, whatever. 

Now her seizures are fewer (i.e not everyday) and remain minor however, the duration has been getting longer.  We have had a few seizures that lasted nearly 3 minutes.  The most disturbing change is that they are not explainable:  Sitting up on the wheelchair eating breakfast, lying on the bed in a previously “safe” position.  It really doesn’t sit well with me for something to be completely random.

On Monday night before her sleepless night, she had one of those random seizures.  I’m sorry I hadn’t blogged about it.  At the time it didn’t seem important enough to mention.  The Monday night seizure was very subtle.  Satomi was in a normal sleeping position-on her right side, hugging a pillow-about an hour before bedtime.  I was in my bedroom and watching her on the video baby monitor.  Her Mom was in the room, helping position her and making her comfortable.  Her Mom had just covered her with her big plush blanket when I noticed her hand twitching.  I ran in the room and pulled back the blanket.

The toes on her right foot were curled up and her right hand was contorted and twitching.  Her face was also twitching but only a little.  I’ve actually seen her twitch more during normal sleep so it was still not clear if she was having a seizure or not.  I tried to wake her up using the “sternal rub” technique (knuckles-in-the-chest-bone-just-below-the-collar) and she remained mostly unresponsive.  I repositioned her into a “safe” position and tried to wake her.  Surprisingly, it took nearly 3 minutes to revive her.  I got scared.  All of a sudden, she woke up.  I was very surprised to see that she didn’t have a headache afterward but her speech was obviously slurred.  She went back to sleep rather quickly.

On Thursday morning she had another seizure that was unusual.  We had transferred her from the bed into the wheelchair so she could sit-up and eat breakfast.  The transfer went well with no signs of unusual fatigue or seizure.  She sat down and scooted back into the chair just fine.  We covered her with a blanket and secured her catheter bag.  The roll-up table was placed and her Mom started feeding her as normal.  Since it was Thursday and the Street Sweeper Gestapo was about to hand out parking tickets, I had to move my car to the park across the street.  On the 5-minute walk back, just as I rounded the corner, I got a phone call and I saw my garage door open.  My Mom was relaying a message about something wrong upstairs.  I ran down the street, up the stairs and found Satomi sitting in the same spot having a minor but obvious seizure.  She was in the middle of chewing her food and she kept on chewing and chewing.  I was concerned about choking and aspiration so I got her attention and had her spit out her food.  It ended as all the others and there was no significant headache afterward.  Meals had always been a comforting time so I was not happy that this happened.  It’s just more evidence that vigilance can’t take a coffee break…or move your damn car.

It seems that she has some neurological damage and I assume it’s from these seizures.  The RN said that these “seizures” may well be minor “strokes” but here is no way to know.  Either could explain the limited movement she has in her right hand.  She has mobility problems too but it may very well be due to the Decardon induced muscle atrophy.  At this point, there’s no positive way of knowing how or why.

From → Daily Life

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