I need some sleep...

I'm wondering how many of those represented here are restless sleepers??

You don't have to elaborate... unless you want to. Surely, there has GOT to be a link between restless sleep and having Down Syndrome.

Josh sits up, flops over, turns around, makes weird noises with his mouth like he hasn't had a drink in 4 weeks, sits up, GETS up, flops around... it's NEVER-ENDING! He does NOT seem to have breathing issues tho... perhaps reflux issues with bits of what sounds like choking now & then (something coming to the back of his throat), but no reflux med we have tried has made ANY difference.

He had a failed hip surgery in February. The hip is popping in & out just as before and I know the position he sleeps in at night isn't helping it (feet together with head on feet, bent at waist). I can't keep him OUT of the position tho. Ortho put him in a brace this week, which means LESS sleep for me.

I sound selfish... but he SEEMS to be sleeping thru all of this and it's ME that can't get any rest. He has a king size bed and I always end up with him... because he won't stay in it alone after midnight (stinker!!). Spoiled... I know... but we've tried putting him back and then NOBODY in the house gets sleep. Someday, we'll get tough.

Anyway... so restLESS or restFUL... how do YOUR kids sleep!

Thanks SO much! We have a visit with the doctor soon and I want to have some things to discuss with him.

Susan & Josh (7)

RestLESS here. Austin also flips, flops, rolls, turns, sitsup, flops back down the other way..all night long. Makes me really worried for when it's time to put him in a big boy bed. I have yet to talk with the doc about it. I was hoping that when he had his T&A's out, that it would help, but it didn't. UgH.

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~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin

Talitha never stops moving in her sleep - she sits up and flops down all night. She has sleep apnoea and had her T&A done but she is still a terrible sleeper. We have to give her clonidine just to get her to sleep and she is up and down all night. I have just put her in a toddler bed right next to mine because she was sleeping with us and I was getting kicked and headbutted and woken all night.

I am going to ask for another sleep study next ped appointment.

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

Grant sleeps pretty well in his toddler bed, but he is an early riser - ready to start the day by 5:30 every morning

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Robyn
Grant (6/06 DS), Logan (12/08 )

Lucy is incredibly restless. We moved her into her own crib in her own room at only five weeks because she was keeping us up every night! She doesn't appear to be any worse for wear, though and has lots of energy throughout the day.

The funniest thing about Lucy's sleep is that she often falls asleep sitting up in her bed...and then just folds herself over. I often find her asleep with her feet next to her head. I always lay her out on her tummy though, because I feel like that can't be good for the circulation to her feet! {Hyperflexibility MAY be the funniest part of Down syndrome. Lucy had her big toe in her ear the other day.}

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~Courtney
{Lucy, 3, Ds, AVSD repaired 1/08; Brodie, 1}

Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" -CS Lewis

Crazy sleep issues here too but only for the last 2 years.
I had 4.5 years of sleepful bliss....bed 7pm awake 7 am!

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Linda & John
mom to Hannah Kate (Age 12 ), Robert (Aged 6 - DS)


First day at school

Ethan is also a mover/tumbler all night long. It can be attributed to sleep apnea, so be sure to have that checked out. I also found out at convention that a lot of our kids have RLS- Restless Leg Syndrome.

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Kristen: Wife to Scott, Mama Bear to Ethan
(05/25/01, DS & ALL)
Independent Demonstrator, Uppercase Living
http://kris10z.uppercaseliving.net

Sienna is EVERYWHERE in her crib. Seems she can't sleep still! She used be be the stillest little sleeper, but now that she CAN move - good grief it isn't a treat if she has to sleep by me!

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Lorene in MI
Wife to Thad
Mom to Mackenna (6/1/97) Tanner (2/12/99) Ashton (3/8/01) and Sienna (7/14/09)
http://vimeo.com/6835028

LinMac wrote:

Crazy sleep issues here too but only for the last 2 years. I had 4.5 years of sleepful bliss....bed 7pm awake 7 am!

Oh, Lucy sleeps from 7 to 7, (well 7:30 to 7-ish), but if you check on her every half hour, she's going to be in a different position every single time.

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~Courtney
{Lucy, 3, Ds, AVSD repaired 1/08; Brodie, 1}

Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" -CS Lewis

Henry is all over the place all night long. We have a queen size bed with 4 people sleeping in it. So on top of Henry’s restlessness, we have Ramona yelling at him to stop touching her. The head butts are really fun. He sits straight up and then slams himself back down, never even opening his eyes. He has had his own bed in his own room for the last 2 years, but has slept the whole night in it maybe 5 or 6 times. When it gets really bad, Mark will take him back to his room and stay with him. That works only sometimes. Usually he’ll just crawl over Mark and come back to bed with Ramona and me. Ramona has her own bed too, but doesn’t stay there either. It's not easy to nurse at night with all the commotion. Hopfully one day in the very near future the older kids will stay in their beds in their own room.

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Racheal
mom to Henry (01/06), Ramona (06/08), and Cora (2/10)

(by Valeri Andersen photograhy, unedited)

Don't underestimate my ability
Don't definate my character
Don't belittle my authority
It's time you recognize my quality

-Peter Tosh, I Am That I Am

VERY restless here. Possible sleep apnea and definitely Restless Leg Syndrome. Oliver is getting his first sleep study at the end of the month. If you haven't done that, you need to get it done.

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--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

Yes, yes, yes! All over the place, I think Nichole will be in her crib until she no longer fits!

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Ellen, honored to be married to Andy since Feb 2003 and mom to Ellie (08/21/05) Nina (05/01/06 CP) and Nichole (10/02/07 DS)
www.elliestumbo.blogspot.com

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
God does not make mistakes

I'm not to entirely sure! She usually sleeps 13+ hours, but while I'm still up I do hear lots of leg kicking. For the most part though, she sleeps pretty solid!

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Kasey, mom to Paige (2!)

Courtney wrote:

The funniest thing about Lucy's sleep is that she often falls asleep sitting up in her bed...and then just folds herself over. I often find her asleep with her feet next to her head

Ethan does the exact same thing! How he can sleep with his face touching his toes I'll never know. I also find him asleep during the day sitting up! I've lost count the number of times I've found Ethan sitting on the floor with his head tilted back........snoring

Ethan is a pretty good sleeper......sleeping 10-11 hours through the night.....he can also be very restless though.......I can often hear his feet as they bang the side of his crib and he's never in the same place twice. I've given up trying to put a blanket over him during the night.....it just ends up scrunched up in a corner somewhere with all the movement!

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Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

Till he had his T&A...he had to postition himself to keep his airway open then would have some apnea and get very restless and would throw himself out and over the rails of his Jr bed so I started sleeping with him so he could sleep on me to get good position and eliminate some apnea.

Note they always thought his tonsils were big and were shocked when removed that they were actually mushroom shaped...so upon quick inspection they may not have looked bad to the examiner. However, he was so gaggy an exam was very limited. I believe his tonsils are the cause to him not eating for almost 3 years!

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Sherry
Evan 10, Olivia 9, and Nate 6*

Hosted on Fotki

Lucas has always been a good sleeper (well, so far!), although he's pretty restless. Sometimes, if he's very tired, he'll sleep very still and well. The best is when he's in bed with us (which we try to keep to a minimum) and he's kicking me in the head, which seems to happen every time. We are definitely going to get him checked for sleep apnea and to the ENT to see if he needs to have his T&A removed.

Good luck!

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Sandy, momma to Lucas "the bean" (10/15/06)

Very restless here. Lots of movement. She sleeps from about 830 or so til about 6 or 630 usually. But she wakes, at least partially, many times. I can hear her from the room next door, so there is NO way I'd have her in the same room. There would be no sleep for me, for sure!

She's had a sleep study and just had her T&A 2 days ago. When she heals and is fully recovered, I'm curious to see if it is still as bad. Our docs have told us it is often just "what they do." Whatever that means...

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RK



http://justrk.blogspot.com
Nebraska Larae, 11/21/06, DS, AV canal repair, G-tube
http://braskabear.blogspot.com
Kinlee Carene, 02/09/09
http://kinleecarene.blogspot.com

Courtney wrote:

Oh, Lucy sleeps from 7 to 7, (well 7:30 to 7-ish), but if you check on her every half hour, she's going to be in a different position every single time.

This is Natalie. She is a very heavy sleeper but does roll around a lot.

momof6 wrote:

Makes me really worried for when it's time to put him in a big boy bed.

We have Natalie on a twin mattress on the floor. She can roll out of it without getting hurt (usually doesn't wake up) AND can successfully get in and out of it and has since she was 2. When she goes 4ish months or so without coming out of it we will put it up on a frame.

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Lori
DH and I are 33

June 19, 2008~ Alyssa

Natalie's web page
Natalie's video montage
Alyssa's web page
My photography website

Well, I guess I am one of the odd ones out on here because Katelyn is very still & sound. I always thought maybe that was because of her DS, but I no longer think that's the case after reading all these replies!

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Kristen
Mom to Zach (Jan 2005) and Katelyn (Feb 2008 DS)

Teddy sleeps like a little angel, always has. Thank goodness because I love my sleep.

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Jennifer
Teddy Joe's very proud mommy.

Oh geez, you've describe Kayla exactly. She's only still for the first hour or two of the night, then she's everywhere. She's in a toddler bed a portion of the night but I constantly have to get up and lay her back down so she won't slam her face into the sides of the bed (even though I've put padding on them too). I will find her in the weirdest positions. She does have reflux but is on medication and goes in cycles, so even when she's not going through a rough spot with that, she still won't sleep peacefully. Tonsils and adenoids out too (hoped that would be the miracle sleep cure but it wasn't)..... i havent slept well in 5 years so I totally feel your pain.

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Alicia
Mom to: Christopher - 23 years old
Dex - 21 years old
Lierin - 21 years old
Kayla - 9/6/05 (DS)
Braden- 9/11/07

crazy night wiggler over here too.......

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Shaye
Bri 15, Coda 13, Hunter 5(ds), (and hubby Brad)

God reaches his hand to you through angels you have never seen as well as people you've seldom been without.

David is only restless while he's falling asleep and for the last half hour or so before he wakes up, in between he only shifts position a couple times a night.

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http://www.carepages.com/carepages/DavidLucas

Courtney wrote:

Lucy had her big toe in her ear the other day.}

So funny - Mark's flexibility amazes and sometimes scares me - I'm usually thinking "that has got to hurt!", but no he just smiles as he lifts his leg next to his head - lol!

Mark sleeps OK for the most part. He is not restless all night, but I do here him flipping and flopping from time to time.

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (2 - ds, av canal -repaired 6/10/08, pulmonary hypertension)
https://www.carepages.com/carepages/MarkEdwardC32708

Hi Susan, My vote is sleep apnea.This described Hannah before her T&A and then CPAP.Restless leg (or PLMD-periodic leg movement disorder)often goes along with the apnea.Once we treated the apnea, the PLMD went away.Now Hannah sleeps in the same position all night.She used to sleep folded over too.I can't help but wonder if that contributed to the hip situation.How is Josh doing with the brace?

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Mom to Hannah(11)DS and Logan (7)

Josh is doing okay with the brace. We're only using it at night and he asks for it every night. I know it's not going to tighten anything (dr. thought it might) but it does keep him from being in the totally bent in the middle with his head on his feet position, which is NOT good for him at all. His hip is totally out in that position.

That being said... I encourage those of you that said your kids sleep like that to have their hips peeked at by an ortho. It's common (from what I have been told) for kids (people) with DS to be flexible... but also to be 'missing' the backs of their hips... thus so hyperflexible, hips popping and adults with DS AND hip issues. Anytime I hear someone say their child sleeps like that... I shutter! Josh's hip is completely out in that position.

So many times I hear people say "yeah, the hip clicks but my doctor said don't worry about it". It IS cause for worry... unfortunately.

I hope I didn't frighten anyone... it's kinda my soapbox lately I guess.

Thanks for all the responses here. Josh has actually been sleeping a bit better in this brace. Well, he is still a constant mover but at least he's not coming to get me EVERY night (just 5 out of 7)!

Susan & Josh (7)

4littlelambs wrote:

That being said... I encourage those of you that said your kids sleep like that to have their hips peeked at by an ortho. It's common (from what I have been told) for kids (people) with DS to be flexible... but also to be 'missing' the backs of their hips... thus so hyperflexible, hips popping and adults with DS AND hip issues. Anytime I hear someone say their child sleeps like that... I shutter! Josh's hip is completely out in that position.

David's hip was actually out of socket when it was straight. When he was in a froggy-legged or folded in half position it popped back in. Guess I'll have to blame that one on the CP. LOL

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http://www.carepages.com/carepages/DavidLucas