9 year old with very strange sleep disturbance? Help!

[IdentityCrisisMama]

Hello, 

I'm wondering if anyone can help me.  DC has had 3 nights in the past week where she wakes super frequently and is in the oddest state of consciousness.  In many ways she appears "normal" and can have a conversation but then will slip in things like, "Ok, I just need to get the cupcakes," and other very odd things as if she's talking from a dream.  When I say, "What cupcakes?" she seems super startled for a second and then cries, seems "awake" for a second and then will slip back into the dream comments.  

She has done something (I guess) related in the past where she wakes up and is TOTALLY not awake and is kind of babbling nonsensically but this is different and more worrying.  First because it's so strange but also because it's happening many times throughout the night and also because no matter what I do (turn on the light, go into another room, have a drink of water) she doesn't snap out of it.  I mean for a second she seems to and can talk to me but then she'll say something strange again.  

My DH talked to her tonight and is worried.  I wasn't super worried until I came in for the next waking and am starting to worry as well.  

Has anyone experienced something like this?  Do you know what type of problem this is so I can start to research it?  WWYD in this situation?  

[IdentityCrisisMama]

In desperation I posted her and also e-mailed a friend who works with sleep disorders.  Apparently DC has some sort of parasomnias called confusional arousal.  The most common cause seems to be lack of sleep and it looks like it's not uncommon.  

[4evermom]

My ds does that sort of thing.  He has always been prone to sleep disturbances.  They are all related: insomnia, nightmares, night terrors, sleep walking, etc.  The main trigger for most sleep disturbances is being over tired from an unusual amount of activity or from not getting enough sleep.  I usually just humor ds when he talks in his sleep like that.  He'll sit up in bed with eyes open, though they usually look a bit glazed.  Try getting her to bed earlier or cut back on excessive activities (that would be something like a hard afternoon of sledding for my ds).

[blessedwithboys]

Saw this on new posts and just had to put in my 2c.  I have confusional arousal and sleep paralysis.  Might have had cataplexy once or twice too, in retrospect.

My now-16yo ds has always had weird sleep stuff going on.  He was a backwards sleeper in infancy, meaning he slept all day and was up (and crying) all night.  He didn't STTN until 24 mos.  He got "normal" by preschool age but that's when the night terrors began.  Terrible insomnia all through early childhood...so on and so forth until about a year or so ago when he began literally not being able to stay awake AT ALL, even during stimulating activities. 

Earlier this month he was diagnosed with narcolepsy.  And I found out that my fibromyalgia and chronic fatigue is also more than likely narcolepsy.

If you have decent insurance, it may be worth it to have a sleep study done.  I don't mean to say that your dc has narcolepsy, or any other serious sleep disorder.  I'm just on a PSA mission now that my son has a dx.  I feel terrible that it took his entire childhood to find the answer, and I hope to spare others the same misery, just by spreading the word.  Hope you don't mind.  :)

[nextcommercial]

I still get teased for doing this at this same age.  (My daughter's always done this herself)

I was sleeping at my cousin's, I was apparently the only one asleep, when I woke up to "eat".  I had nothing to eat, but I was eating it anyway. Someone said "What are you doing?"  I answered "Playing Parcheesi".  So, now whenever someone in the family is confused we say "Playing Parcheesi?"

I stopped doing it at around 14, my daughter stopped at around 12.  It always seems to happen in clusters.  Several nights at a time, then nothing for a few months.  I also noticed with my daughter it happened more when she had a big project due at school.  I think she had a hard time falling asleep because she was overthinking, then woke up with these weird drugged out looking episodes.  

[4evermom]

Originally Posted by nextcommercial 

I was sleeping at my cousin's, I was apparently the only one asleep, when I woke up to "eat".  I had nothing to eat, but I was eating it anyway. Someone said "What are you doing?"  I answered "Playing Parcheesi".  So, now whenever someone in the family is confused we say "Playing Parcheesi?"

It beats sleep walking and urinating in strange places like my brother used to do (fireplace at a sleepover, one time). 
 

[meemee]

 lol my poor mom. i was the child who was always trying to pee in the refrigerator and my bro was the one doing the talking. he has done it all his life. even if he took a nap in the afternoon. she learnt never to try to wake me but gently direct me to the bathroom. 

and yes while i stopped early (though i can do totally routine stuff at night - wake up to do chores and never remember doing it) my bro did it past his teens. it didnt seem to affect his lifestyle at all so no one ever thought anything of it. 

but oh man did it create some laughs to be shared at the family table. like teh time chemistry put on pants and shirt and was going to climb the tree. 

[IdentityCrisisMama]

What is very interesting to me is how uncommon this is and, yet, there seems to be relatively little info/discussion about it.  Fortunately, Dr. Green has a good article but, other than that, I'm not seeing too much.  

Now that I've read the description I realized that DC has basically done this her entire life and it's just taking a different form now that she's older.  She has had it as far back as potty learning and we did quickly learn the trick Dr. Green describes of putting her on the toilet, which solved the problem.  I think a full bladder was the reason for waking in this state for several years and, therefore, they were sporadic and easy to resolve.  

About 2 years ago during a really crazy vacation DC had one kind of severe incident where she woke "wanting her mom" when I was right there.  "No," she would say, "I want my REAL mom."  She would have these ever so often but not regularly.  

This newest phase, I suppose is either sleep deprivation or stress related (she may have some stress with learning to read with what we think is a mild LD).   There is something slightly less intuitive about how to handle it now that she's older, which is part of why it is more worrying now.  She is also slightly less dream like which, oddly, makes it a little creepier for some reason.  DH commented last night (not that seriously) that maybe she has schizophrenia.  

 

Anyway, we'll work on the sleep deprivation angle and see if that resolves it.  If not, we'll address the stress factor.  I would address stress now but she is showing no other signs of stress and has been staying up late so I think the best assumption is that she isn't getting enough sleep. 

Thanks for all your stories!  I got scared last night probably because I was woken up for the 5th time and she was just acting so strange.  The last thing she said before bed was, "But Kirsten (our neighbor) only has half a doll," and then she brought her pillow in to our room saying it was our other neighbors pillow along with another odd comment.  

I think I'll also talk to DH and see if he's up for letting her sleep with me in our big bed for a few nights to get her back on track.  Oh, and I did get her to take a short nap this morning.  Wacky stuff!  Thanks, mamas!!  

[ghannit]

My younger sister and I shared a room until she was 8. I remember her being a very active sleeper in childhood, and talking in a seemingly coherent way in her sleep. I suppose at a young age I thought it was the norm, and that I did it too. Later it was just funny to me, and I'd sometimes engage her in "conversation" which she never remembered the next day.

Later in her teenage years (and particularly at times when she was overworked/overtired), she would actually get out of bed and talk to the family. My father likes to bring up one such time when he was talking to her in the hallway and suddenly realized she was not really awake. "Are you asleep!?" he said incredulously, looking into her blank eyes. 

I think she "came to" around that point.

Long story short, I'm not sure if there is any connection, but she was fitted with a bite plate in her early 20's due to headaches from grinding her teeth. It took some sort of bite-plate specialist to finally get the right fit, and now she is apparently headache and sleep-waking free.    

A coincidence perhaps, but might be worth mentioning.

[IdentityCrisisMama]

From my reading I do think teeth grinding and this sort of sleep disturbance are related - but nothing I read so far implies that one caused the other.  I will talk to the dentist when we go in though, thanks for the thought!  

[sunnygir1]

I haven't read all the posts yet, but I did something like this when I was a child. I don't know if it was multiple times in one night or not, but I would definitely get up and talk to my parents and not remember any of it in the morning. My mama said that she would ask me if I needed to use the bathroom or get a drink of water, and then she would tell me to go back to bed, and I usually would.

I also had pretty intense sleep/dream walking when I had fevers as a child. There were times that I was so agitated that my mama held me down because she was worried I'd run into something and hurt myself.

I guess it was nothing to worry about, and I haven't had any lasting effects into adulthood.

[IdentityCrisisMama]

I thought I'd check in and let you know how it's going.  The morning after I posted this I did a bunch of reading and decided the first thing to try was to see if DC was maybe sleep deprived (though not showing any other symptoms).  We started a pretty strict unwind, read, lights out routine and have been doing that for the past 3 nights.  Each night her wakings got fewer and fewer.  In fact, by the second night the confusional stuff had stopped.  Last night I heard her wake up twice but she did not get out of bed.  I'm hoping for a full nights sleep tonight!  

[meemee]

mama that's AWESOME that you were able to figure this out so easily. 

i am hoping your dd will fall into the pattern of sleeping more without giving you a heartache or fighting it. 

interesting what a side-effect of not getting enough sleep. 

and oh yes to intense dreams. i have given myself a high fever as a 5 year old because a calendar in my parents bedroom would give me nightmares. but i never told my parents until that night i had very high fever and was hallucinating. that's when my parents found out. wonder why i never told them how frightened i was of their calendar which was nothing but modern art of glow signs on black background. but i saw something else.

which reminds me - OP does your dd have a VERY active imagination - more than usual? my dd and i are like that and our minds can really frighten us. 

[IdentityCrisisMama]

Originally Posted by meemee 

mama that's AWESOME that you were able to figure this out so easily. 

i am hoping your dd will fall into the pattern of sleeping more without giving you a heartache or fighting it. 

interesting what a side-effect of not getting enough sleep. 

and oh yes to intense dreams. i have given myself a high fever as a 5 year old because a calendar in my parents bedroom would give me nightmares. but i never told my parents until that night i had very high fever and was hallucinating. that's when my parents found out. wonder why i never told them how frightened i was of their calendar which was nothing but modern art of glow signs on black background. but i saw something else.

which reminds me - OP does your dd have a VERY active imagination - more than usual? my dd and i are like that and our minds can really frighten us. 

Thanks, Meemee!  It is a huge relief to have a "name" for what's going on with her if at least so I can look it up, find out how common it is and research causes and etc.  It's also a huge relief to find that (hopefully) DC's sleep/dream stuff is due to not enough sleep and not from stress or some other more challenging issue.  

I'm not sure if she has a more active imagination than the average person.  She certainly nightmares but I don't think more than the average child.  I'll keep that in mind as a possible related thing though.  

[meemee]

Originally Posted by IdentityCrisisMama 

I'm not sure if she has a more active imagination than the average person.  She certainly nightmares but I don't think more than the average child.  I'll keep that in mind as a possible related thing though.  

dd and me - when i was her age have never EVER been able to sleep with the night light on. the shadows cast on the wall scared us too much. we could tell stories from the shadows on the wall. at non bedtimes we always found something funny in the shadows. at bedtime those shadows took on sinister forms. so we have always slept with the main light on. 

[IdentityCrisisMama]

DC is funny - she went from very dependent on the family bed to sleeping on her own, wanting the door shut and the lights off (she would even come out and turn off all the other lights on that floor).  Though, after a set back last night, I did offer for her to come into our bed (so I could get some sleep).  It must have been quite a while since DC has slept a full night in our bed because - WOW - does she take up a lot of room!  

The way things were going the first three nights I was hoping for a full night last night...I should know better than that.  ;-)  Hopefully today will be better.  

[IdentityCrisisMama]

It's been a month since DC started with these sleep disturbances.  I thought I would check in - give an update - and post about what we've tried.  Mostly in case someone else comes to this thread for help.  

Things have gotten better, for the most part, since we've been on this super rigid sleep schedule.  I think DC needs a good 12 or so hours of sleep.  We have had many nights where she wakes very little, 4 nights where she did not wake up at all (two in a row these past 2 nights) and a few fairly major set backs.  The couple of bad, set back nights were clearly associated with not getting her in bed on time.  

Here are other things that we tried: 

On the worst night (what I would probably consider a night terror) I decided to give DC a dose of Benadryl.  I had  tried magnesium when she was begging for "help" getting to sleep but the mag didn't seem to help.  The sleep terror was so bad and DC was so, so miserable that I thought I'd give the Benadryl a try.  She did sleep the rest of the night that night.  

The following night she slept all night.  A night later we did not get her to bed on time and she had another pretty disruptive confusional arousal episode.  The following day I went to the health food store and spoke to a guy who recommended vitamin D.  I had gotten off the vitamin D bandwagon a while back after reading a bunch of articles about it but decided it couldn't hurt to try.  The past 2 nights DC has been taking a multi-vitamin, fish oil and a high dose of vitamin D.  It will take a bit of experiment to confirm any correlation but she has slept through these past 2 nights.  

Things I'm still willing to try are homeopathy and I also read that b12 can help with sleep.  We will also be making a better effort to get outside AND I'll be taking note during any future episodes whether they are at all seasonal.  

The other factor may well be that this episode may have just run its course -- I understand they come in clumps lasting usually less than a month.  Basically, I still don't know but am a little hopeful that maybe I've found something to give her when things get bad.  

[JessJoy]

Try taking the child to cranial sacral therapy. I've heard that it can do wonders for children with sleep disorders.

[IdentityCrisisMama]

Thanks, JessJoy.  I did not try CST mostly because we're not dialed into the massage culture in my town and I wasn't up for cold calling therapists...or the expense.  I have stored that in the back of my mind though.  I appreciate it!  

I'm back with another update.  After about a week of the vitamin D I didn't feel like I could attribute any success on that.  I was also worried because the dosage was quite high and I didn't feel comfortable giving DC that much for a long period of time.  I haven't totally given up on the idea though and we are trying to get outside more, which has no negative side effects that I'm aware of. :-)  

We have found that the 12 hours of sleep is a bit too much to accomplish (just not enough time in the day).  We've laxed a bit and I think DC is getting more like 10-11.  She's going to bed around 8 and getting up around 7 give or take an hour on each end.  

Still, I felt that DC needed some help so here is what we tried next: 

I did a search on MDC and elsewhere for "sleep-aids" for children.  What I found was that Melatonin appears safe for children (maybe not long term) and appears to have been successful in several trials.  I also found that two Hyland's products got good reviews - Calm's Forte and their Insomnia tabs.  I have been giving DC these three for about a week and they seem to be helping a great deal.

Non-internal things we've done are install light blocking shades and last night I gave DC a soft mattress pad and topper.  She came in this morning saying that she slept great...which is not something we've heard in a LONG time.  

If anyone is looking at this thread for help with their DCs here is what I would try first (based on our trial and error): 

A good sleep routine including more hours of sleep than what your DC was getting

When your DC wakes, do not contradict what they are saying - just go along with it.  A back scratch helped my DC very much when she was in this state.  

Try to feed your child at least 1 or 2 hours before bed.  Try to limit large amounts liquids just before bed as well.  

Ask your DC to use the bathroom before they fall asleep and offer the bathroom during wakings.  

Try to increase your child's outdoor play time. 

Consider light blocking shades (about $8/window and easy to install).  

Test your child's bed for comfort.  I've ready that lighter people are often more comfortable in a softer mattress.  

Consider trying Calm's Forte, Hylands Insomnia tabs or Melatonin (get timed release if you can).  

Try other things above in the thread (Cranial Sacral, Vitamin B-12 or D, chamomile).  

[IdentityCrisisMama]

Oh, and I wanted to add what I found helpful to read.  

I liked Dr. Green's article on sleep terrors: http://www.drgreene.com/qa/what-are-night-terrors

I found searching MDC was helpful as was Googling "confusional arousal".  

If you Google melatonin/children/sleep there are many articles and studies (mostly small but helpful still).  

I did not like the often recommended book, "Sleepless in America".  I found it to be super obvious advice - not a single new idea in the whole thing.  Perhaps good for a non-attachment/GD parent maybe.