Sadie has had 3 big weird episodes and many small episodes since the beginning of January.
The first one (Jan 5th): I didn't even really realize it was weird until the 2nd and 3rd one occurred. Probably to the average person, it is really not that weird. It was that she took a 7 hr nap. She slept from 2 in the afternoon until 9 that night and then went back to sleep again around 11. Slept all night. I just assumed she was super sleepy. During that 7 hr "nap" I changed her diaper and clothes, moved her from wheelchair to crib, to changing table, and then back to crib. She wanted nothing to do with waking up. The next morning she was wide awake with no concerns.
Over the next couple of weeks she had many small episodes of extreme sleepiness. She would just fall asleep in a blink of an eye, almost like a narcoleptic. She would take many, many small to medium naps and during the weirdest times. Like when I'm changing her diaper, or brushing her hair, or getting her dressed. I would put her in her wheelchair to go to school and she would fall asleep. She would come home from school and get off the bus asleep. I would read what the teacher wrote in her communication book, she slept during class. All she wanted to do was sleep. Normally, she is a great sleeper... at night. She will sleep 12-14 hrs every night. And sometimes will take a short nap during the day. These sleeping episodes are odd for her.
The second episode (Feb 16th): Sadie didn't wake up at her normal time. I heard her at her normal time, but every time I went to get her up, she would be already back to sleep. I had worked the night before and decided to go to bed and let my mom get her up when she finally woke up for good. A couple of hours later, my mom wakes me and tells me that Sadie isn't acting like herself. She told me that Sadie seemed super sleepy, and over all nothing seemed right about her. I thought "great, she is getting sick". As the rest of the afternoon went on Sadie was acting more and more odd. She was awake and looking at me, but she wasn't seeing me. She wouldn't move her body. She wouldn't make her normal happy (or unhappy) noises. My two other girls came home from school, looked at Sadie and freaked out cause she was limp and pale. I reassured them that Sadie was ok and I sent them to their friends house down the street. I called my husband at work and told him something was wrong with Sadie and I needed his thoughts (being an RN can be my enemy, it's nice to have a non medical mind looking at her). He came home and messed around with her. We did everything possible to annoy her. We picked her up (she was completely limp), played with her hands, brushed her hair, tickled her, and then finally started to sternal rub her. She was very pale. We got very little reaction. We hooked her up to all her vital machines. Everything was in the normal range. No signs of distress at all. Finally, we both looked at each other and said "take her to the ER". So I quickly packed a bag for both of us, put on her coat, picked her up and started out the door. That's when she started to make her unhappy noises. I laid her down and my husband started to mess with her to annoy her on purpose. This time it worked. She laid awake complaining to him for awhile. We decided to hold off on the ER. She was slowly snapping out of it. An hour later she feel asleep again. She slept for a little while and then I decided to wake her up. This time she woke up and was happy, still not moving much or verbalizing a ton, but she was looking at us and seeing us. Over the next couple of hours she started to move and "talk", finally she started to play with her feet and we knew she was back to her old self. No idea what that episode was all about. She went to bed that night, slept all night and woke up the next day as if nothing happened the day before.
The third episode (Feb 27th): This one I did not witness. I had told Sadie's teacher about the second episode just so she could watch out for them and to ask if she had ever seen anything unusual. She said she had never witnessed anything, but of course would let me know if she did. Well, one afternoon I get a phone call from her teacher saying that Sadie was in the middle of an "episode". She explained that Sadie was asleep when she got to school and they let her sleep. Finally, they decided that they would start to wake her up. They picked her up and she was limp they proceeded thinking that she was still tired, they changed her diaper and then started to do an art project with her in which they paint her hands. She made no complaints, no pulling away, no "telling them off", no nothing. That's when they realized something was wrong with her. They laid her back down on the mat she stared at them as if looking right threw them and then she closed her eyes and fell right back to sleep. They called me, told me about the whole "episode". I decided to go pick her up from school and take her to the ER. I made arrangements for my other girls for afterschool and off I went. By the time I got to her school she was starting to snap out of it. I was happy, but at the same time, I really want medical people to see her in this state of almost complete paralysis.
What is going on with her? What am I go to do about these episodes? I guess it's time to start seeing specialists again!
The first one (Jan 5th): I didn't even really realize it was weird until the 2nd and 3rd one occurred. Probably to the average person, it is really not that weird. It was that she took a 7 hr nap. She slept from 2 in the afternoon until 9 that night and then went back to sleep again around 11. Slept all night. I just assumed she was super sleepy. During that 7 hr "nap" I changed her diaper and clothes, moved her from wheelchair to crib, to changing table, and then back to crib. She wanted nothing to do with waking up. The next morning she was wide awake with no concerns.
Over the next couple of weeks she had many small episodes of extreme sleepiness. She would just fall asleep in a blink of an eye, almost like a narcoleptic. She would take many, many small to medium naps and during the weirdest times. Like when I'm changing her diaper, or brushing her hair, or getting her dressed. I would put her in her wheelchair to go to school and she would fall asleep. She would come home from school and get off the bus asleep. I would read what the teacher wrote in her communication book, she slept during class. All she wanted to do was sleep. Normally, she is a great sleeper... at night. She will sleep 12-14 hrs every night. And sometimes will take a short nap during the day. These sleeping episodes are odd for her.
The second episode (Feb 16th): Sadie didn't wake up at her normal time. I heard her at her normal time, but every time I went to get her up, she would be already back to sleep. I had worked the night before and decided to go to bed and let my mom get her up when she finally woke up for good. A couple of hours later, my mom wakes me and tells me that Sadie isn't acting like herself. She told me that Sadie seemed super sleepy, and over all nothing seemed right about her. I thought "great, she is getting sick". As the rest of the afternoon went on Sadie was acting more and more odd. She was awake and looking at me, but she wasn't seeing me. She wouldn't move her body. She wouldn't make her normal happy (or unhappy) noises. My two other girls came home from school, looked at Sadie and freaked out cause she was limp and pale. I reassured them that Sadie was ok and I sent them to their friends house down the street. I called my husband at work and told him something was wrong with Sadie and I needed his thoughts (being an RN can be my enemy, it's nice to have a non medical mind looking at her). He came home and messed around with her. We did everything possible to annoy her. We picked her up (she was completely limp), played with her hands, brushed her hair, tickled her, and then finally started to sternal rub her. She was very pale. We got very little reaction. We hooked her up to all her vital machines. Everything was in the normal range. No signs of distress at all. Finally, we both looked at each other and said "take her to the ER". So I quickly packed a bag for both of us, put on her coat, picked her up and started out the door. That's when she started to make her unhappy noises. I laid her down and my husband started to mess with her to annoy her on purpose. This time it worked. She laid awake complaining to him for awhile. We decided to hold off on the ER. She was slowly snapping out of it. An hour later she feel asleep again. She slept for a little while and then I decided to wake her up. This time she woke up and was happy, still not moving much or verbalizing a ton, but she was looking at us and seeing us. Over the next couple of hours she started to move and "talk", finally she started to play with her feet and we knew she was back to her old self. No idea what that episode was all about. She went to bed that night, slept all night and woke up the next day as if nothing happened the day before.
The third episode (Feb 27th): This one I did not witness. I had told Sadie's teacher about the second episode just so she could watch out for them and to ask if she had ever seen anything unusual. She said she had never witnessed anything, but of course would let me know if she did. Well, one afternoon I get a phone call from her teacher saying that Sadie was in the middle of an "episode". She explained that Sadie was asleep when she got to school and they let her sleep. Finally, they decided that they would start to wake her up. They picked her up and she was limp they proceeded thinking that she was still tired, they changed her diaper and then started to do an art project with her in which they paint her hands. She made no complaints, no pulling away, no "telling them off", no nothing. That's when they realized something was wrong with her. They laid her back down on the mat she stared at them as if looking right threw them and then she closed her eyes and fell right back to sleep. They called me, told me about the whole "episode". I decided to go pick her up from school and take her to the ER. I made arrangements for my other girls for afterschool and off I went. By the time I got to her school she was starting to snap out of it. I was happy, but at the same time, I really want medical people to see her in this state of almost complete paralysis.
What is going on with her? What am I go to do about these episodes? I guess it's time to start seeing specialists again!
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