desertstrawberry5 Posted August 23, 2017 Share Posted August 23, 2017 (edited) She has been sleeping since 2:30 yesterday afternoon. It's now 7am. She has woken up a little cried, and gone back to sleep a few times. She sometimes doesn't wake from her naps until morning. She's done it at least once this week. But she's usually up at 5am. Edited August 23, 2017 by desertstrawberry5 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted August 23, 2017 Share Posted August 23, 2017 I would probably wake her up and try to get her alert and see what you think. 2 Quote Link to comment Share on other sites More sharing options...
desertstrawberry5 Posted August 23, 2017 Author Share Posted August 23, 2017 (edited) If I wake her, she will scream inconsolably for hours. And refuse to eat. I'm considering it, but i'm afraid to cause her more strife. Edited August 23, 2017 by desertstrawberry5 Quote Link to comment Share on other sites More sharing options...
desertstrawberry5 Posted August 23, 2017 Author Share Posted August 23, 2017 This child keeps my nerves on edge, y'all. I'm not usually a worrier. I have been checking her breathing, and she was crying just a few minutes ago, but she was back to sleep before I put my cup down. Quote Link to comment Share on other sites More sharing options...
Spryte Posted August 23, 2017 Share Posted August 23, 2017 If you can't wake her, and she doesn't become alert without inconsolable crying, I would call the doc. Does she have a fever? Skin color normal? Does she have a rash anywhere - under her clothes, on the torso? Is she taking liquid? Peeing? I am no alarmist about going to the doc, but something about your post has me concerned. Hoping it's all fine. 5 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted August 23, 2017 Share Posted August 23, 2017 If I wake her, she will scream inconsolably for hours. And refuse to eat. I'm considering it, but i'm afraid to cause her more strife. I doubt there is a perfect answer to this....if she is breathing and waking up off and on she is probably fine. It does seem like an excessive amount of sleep even for a 2 year old. 3 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted August 23, 2017 Share Posted August 23, 2017 Doesn't sound quite right - have you checked for fever etc? 2 Quote Link to comment Share on other sites More sharing options...
73349 Posted August 23, 2017 Share Posted August 23, 2017 I'd take her temperature, definitely. Your ped may want to evaluate for meningitis or other infections. 1 Quote Link to comment Share on other sites More sharing options...
desertstrawberry5 Posted August 23, 2017 Author Share Posted August 23, 2017 (edited) If you can't wake her, and she doesn't become alert without inconsolable crying, I would call the doc. This is just how she is all the time. She is awake and eating now. She hasn't peed even though she drank two (small) bottles of water during the night. She's drinking, too. No fever. She doesn't seem sick at all. Edited August 23, 2017 by desertstrawberry5 2 Quote Link to comment Share on other sites More sharing options...
rjand6more Posted August 23, 2017 Share Posted August 23, 2017 I'm not one to worry too much. We don't go to the Dr very often(once or less a year per kid...) BUT, if there is a change in routine so drastic as that, I would take her in. 3 Quote Link to comment Share on other sites More sharing options...
desertstrawberry5 Posted August 23, 2017 Author Share Posted August 23, 2017 I'm sure not everyone knows, but she has some health challenges. She's doing well, but her energy is lagging lately. It's just hard for me to know what is *her* normal and what is not ok *for her*. Excessive fatigue is something she struggles with. She did sit up on her own and fed herself breakfast, both good signs, but she still seems sleepy and not too zesty. I will keep an eye on her. I think i will also pursue further genetic testing. She has been doing so well, but every time something like this happens, I freak out all over again. 3 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted August 23, 2017 Share Posted August 23, 2017 This is just how she is all the time. She is awake and eating now. She hasn't peed even though she drank two (small) bottles of water during the night. She's drinking, too. No fever. She doesn't seem sick at all. Yes I was aware she has some health issues,but not sure what all. I am glad she is awake and eating. I feel like that some mornings! I want to cry out and flop back down and go back to sleep! ;) 2 Quote Link to comment Share on other sites More sharing options...
Janeway Posted August 23, 2017 Share Posted August 23, 2017 I'm sure not everyone knows, but she has some health challenges. She's doing well, but her energy is lagging lately. It's just hard for me to know what is *her* normal and what is not ok *for her*. Excessive fatigue is something she struggles with. She did sit up on her own and fed herself breakfast, both good signs, but she still seems sleepy and not too zesty. I will keep an eye on her. I think i will also pursue further genetic testing. She has been doing so well, but every time something like this happens, I freak out all over again. Did she have the extended PKU testing to rule out all the medium chain and long chain and fatty acid and all that other endocrine stuff that can cause serious fatigue? Quote Link to comment Share on other sites More sharing options...
Selkie Posted August 23, 2017 Share Posted August 23, 2017 I'm glad she's awake and feeling okay. :) 1 Quote Link to comment Share on other sites More sharing options...
desertstrawberry5 Posted August 23, 2017 Author Share Posted August 23, 2017 Yes I was aware she has some health issues,but not sure what all. I am glad she is awake and eating. I feel like that some mornings! I want to cry out and flop back down and go back to sleep! ;) I felt a little bit guilty because I slept late-until 6:30, blazing sunshine! Then of course, I panicked, because she hadn't woken me in 2 hours. She ate all of her breakfast, half of her brother's, is getting her third cup of water and is working her way though my breakfast as well. She has a lot of making up to do. And she's coloring. So everything seems fine with her. 8 Quote Link to comment Share on other sites More sharing options...
desertstrawberry5 Posted August 23, 2017 Author Share Posted August 23, 2017 Did she have the extended PKU testing to rule out all the medium chain and long chain and fatty acid and all that other endocrine stuff that can cause serious fatigue? yes. Twice, maybe three times. We spent a year having her tested and evaluated for every possible syndrome. And a year in therapy. She has had maybe 10 diagnoses and grown out of almost all of them. the last remaining options are atypical Prader-Willi ( does not show up on the test), and unique genetic mutation ( this is the last test that we have not yet done). Quote Link to comment Share on other sites More sharing options...
Spryte Posted August 23, 2017 Share Posted August 23, 2017 (edited) I felt a little bit guilty because I slept late-until 6:30, blazing sunshine! Then of course, I panicked, because she hadn't woken me in 2 hours. She ate all of her breakfast, half of her brother's, is getting her third cup of water and is working her way though my breakfast as well. She has a lot of making up to do. And she's coloring. So everything seems fine with her. Yay! That's great! I didn't know about her health challenges, so was thinking this was a serious change in routine. FWIW, I used to sleep for 24 hours, and stayvuo for two days. My poor parents! Edited August 23, 2017 by Spryte 2 Quote Link to comment Share on other sites More sharing options...
Rachel Posted August 23, 2017 Share Posted August 23, 2017 My kids sleep like this on occasion for no apparent reason. All I can figure is that they were sleep deprived and it finally caught up with them. Hopefully that is all that is going on with Luna. 2 Quote Link to comment Share on other sites More sharing options...
chiguirre Posted August 23, 2017 Share Posted August 23, 2017 This sounds like GW during growth spurts, but he's healthy apart from ASD so I never really freaked out about it. :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
desertstrawberry5 Posted August 24, 2017 Author Share Posted August 24, 2017 Just a little end of the day update. She was a little more subdued than usual, took her normal 2 hour nap, ate her meals, and went to bed at her regular time. She seems fine. She sees her therapist Friday. I'll talk to her about it. but I think she's fine, and just extra tired today. I will keep an eye on her overall activity level to see if she is declining. 5 Quote Link to comment Share on other sites More sharing options...
Seasider Posted August 24, 2017 Share Posted August 24, 2017 This sounds like GW during growth spurts, but he's healthy apart from ASD so I never really freaked out about it. :grouphug: Yes, mine were all like this a day or so before waking up an inch taller! Followed by a couple of clumsy days. 1 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted August 24, 2017 Share Posted August 24, 2017 I haven't followed her story but you mention a lot of medical stuff. Has she been tested for mitochondrial disorders? Some of those have periods of great fatigue. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.