Re: Sleepless and sleep studies..

[Guest guest]

Alina:  Tori WILL NOT wear her CPAP...so the doc gave her singulair to take at night to help open up her airway, and has us run a humidfier.  She has gotten better with this...Liz

 

Hello All and Happy new year!

So I havent post much latelly sice Miss Gabby went back to her old routine of waking up around 1-2 am and stay up until 5-6 am.... and of course not ready to go to school until 10 so she can catch ( and I can too) some sleep...

Melatonin is not working anymore.. she can fall asleep easly at night.. but when I repeat the melatonin at 2 am.. doesnt work anymore...

She is not upset but she is " singing " ( you know.. those noises and sounds they make)

some nights is just her singing, and throwing everything out of her bed (blankets, pillows.. and more) and some nights. we go to the extreme where she gets naked.... and of course she gets cold and wants her stuff back... and that means mommy has to come in.. change her, dress her up again and put everything back in bed...

So tired...

so I wonder... anyone has this going on? I mean .. similar? We did a sleep study and she has sleep abnea... got her tonsils and adenoids out..

Called our pedi. explained the whole thing.. day routine, bedtime routine and night routine.. he said we are doing everything we can..

and he suggested repeat the sleep study...

I seriously hate the sleep study... since she wont sleep anywhere else but her own bed...

arggh...

ideas please?

Alina

-- Liz DeSantis " The person who follows the crowd will usually get no further than the crowd. The one who walks alone is likely to find himself in places no one has ever been before. "

" Creativity in living is not without its attendant difficulties, for peculiarity breeds contempt. And the unfortunate thing about being ahead of your time is that when people finally realize you were right, they'll say it was obvious all along. " ---Temple Grandin

" Anyone

can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength. " - Reeves " Knowing trees, I understand the meaning of patience. Knowing grass, I can understand persistence. "   - Hal Borland

[Guest guest]

I think the research says that having tonsil and adenoids out only helps with sleep about 50 per cent of the time.  I don't have any proof but I don't think our kids are in that 50 per cent - or maybe tend not to be in that group.

I am with the Benedryl crowd though I think any allergy medication might work.  We use Allegra.  It is great.I hope you get a good night's sleep soon!

 

Hello All and Happy new year!

So I havent post much latelly sice Miss Gabby went back to her old routine of waking up around 1-2 am and stay up until 5-6 am.... and of course not ready to go to school until 10 so she can catch ( and I can too) some sleep...

Melatonin is not working anymore.. she can fall asleep easly at night.. but when I repeat the melatonin at 2 am.. doesnt work anymore...

She is not upset but she is " singing " ( you know.. those noises and sounds they make)

some nights is just her singing, and throwing everything out of her bed (blankets, pillows.. and more) and some nights. we go to the extreme where she gets naked.... and of course she gets cold and wants her stuff back... and that means mommy has to come in.. change her, dress her up again and put everything back in bed...

So tired...

so I wonder... anyone has this going on? I mean .. similar? We did a sleep study and she has sleep abnea... got her tonsils and adenoids out..

Called our pedi. explained the whole thing.. day routine, bedtime routine and night routine.. he said we are doing everything we can..

and he suggested repeat the sleep study...

I seriously hate the sleep study... since she wont sleep anywhere else but her own bed...

arggh...

ideas please?

Alina

[Guest guest]

This is a desperation-only idea. Benadryl doesn't work for Darwyn (age 7 ds asd)

.. It revs him up. We use melatonin at bedtime too.

We rock Darwyn to sleep in a big recliner just like he's a baby. He's 80 lbs and

this is ridiculous, but the sensory rocking let's his brain slow down so he can

sleep.

He just gave up his afternoon nap (at age 7) so its blissful to only rock him

once a day now. We are trying to get him to fall asleep at bedtime without

rocking and now that his nap is gone it sometimes works if I lie beside him and

rock his body. Also a friend built an entire bed that rocks, but at 4 or 5am -

when he's already slept 8 hours, rocking in the chair keeps him asleep enough

that he can then function for a full day at school. Sometimes after rocking him

back to sleep if he wakes up at 1am, we can put him back on the bed, but we also

have a TV in front of the recliner and we watch TV with the closed caption on.

This sounds utterly ridiculous as I write it, but what the heck. Its not really

a recommendation as much a commiseration.

Sent on the TELUS Mobility network with BlackBerry

Sleepless and sleep studies..

Hello All and Happy new year!

So I havent post much latelly sice Miss Gabby went back to her old routine of

waking up around 1-2 am and stay up until 5-6 am.... and of course not ready to

go to school until 10 so she can catch ( and I can too) some sleep...

Melatonin is not working anymore.. she can fall asleep easly at night.. but when

I repeat the melatonin at 2 am.. doesnt work anymore...

She is not upset but she is " singing " ( you know.. those noises and sounds they

make)

some nights is just her singing, and throwing everything out of her bed

(blankets, pillows.. and more) and some nights. we go to the extreme where she

gets naked.... and of course she gets cold and wants her stuff back... and that

means mommy has to come in.. change her, dress her up again and put everything

back in bed...

So tired...

so I wonder... anyone has this going on? I mean .. similar? We did a sleep study

and she has sleep abnea... got her tonsils and adenoids out..

Called our pedi. explained the whole thing.. day routine, bedtime routine and

night routine.. he said we are doing everything we can..

and he suggested repeat the sleep study...

I seriously hate the sleep study... since she wont sleep anywhere else but her

own bed...

arggh...

ideas please?

Alina

------------------------------------

--------------------------------------------------

Checkout our homepage for information, bookmarks, and photos of our

kids. Share favorite bookmarks, ideas, and other information by including them.

Don't forget, messages are a permanent record of the archives for our list.

http://groups.yahoo.com/group/

--------------------------------------------

[Guest guest]

We are in the Benadryl group too. We also do brushing during the day and at

night before bed. We tried time release melatonin and it seemed to work for a

while but then dropped off. Aden refuses to wear his CPAP too. We tried every

night for 6 months before we gave up. Now we use a body pillow to prop him in a

semi-sitting position which seems to help some with the OSA. Does nothing for

the CSA though.

I'm thinking that if she doesn't sleep during the sleep study it would not be

very helpful. In order to get Aden to sleep for his study they gave him 2times

the adult dose of sleeping meds plus melatonin plus clonidine. He was only up 5

times during the night after that .

I don't know if you've tried clonidine but it might be worth a try. It did help

some for Aden for a while.

Hugs

Mom to Aden 8 DS ASD ADHD and Aren 5 ADHD (who also takes melatonin)

Sent from my iPod

[Guest guest]

, age 12, is an erratic sleeper too; he sometimes can't fall to sleep and sometimes is up in the middle of the night and never back to sleep. His sleep study showed hypopneas and apnea in REM but nothing requiring CPAP, which we all agreed he would not keep on anyway. would roam the house at night and keep me up with him. Melatonin helps some. Benadryl is hit and miss. But what has worked the best is a swing-arm top-of-door lock that attaches to the door itself, up high, and that when activated does not allow the door to open more than about 2 inches. When couldn't sleep, after we got this lock, we told him he had to stay in his room and activated the lock. He could see out the crack into the hall but could not get out. This sounds barbaric, I know, but this was recommended

by the safety store staff at our local children's hospital, and we have a very child proofed room and lots of books and music for quiet play in there, and we kept an ear out. At first he yelled for us and cried a bit, but we reassured him calmly and then walked away, like when you let a baby learn to sleep, but really after just a few times doing this he developed much better sleep pattern. It's not always good, but so much better overall. I think he's realized that getting out of bed does not equal getting out of his room to play, watch TV, etc, so his mind isn't so desperate to stay awake.

Just an idea that worked for us (most nights, anyway); might not be the ticket for all, though.

Beth

To: alinachristy ; Sent: Tue, January 17, 2012 3:01:39 PMSubject: Re: Sleepless and sleep studies..

This is a desperation-only idea. Benadryl doesn't work for Darwyn (age 7 ds asd) . It revs him up. We use melatonin at bedtime too. We rock Darwyn to sleep in a big recliner just like he's a baby. He's 80 lbs and this is ridiculous, but the sensory rocking let's his brain slow down so he can sleep. He just gave up his afternoon nap (at age 7) so its blissful to only rock him once a day now. We are trying to get him to fall asleep at bedtime without rocking and now that his nap is gone it sometimes works if I lie beside him and rock his body. Also a friend built an entire bed that rocks, but at 4 or 5am - when he's already slept 8 hours, rocking in the chair keeps him asleep enough that he can then function for a full day at school. Sometimes after rocking him back to sleep if he wakes up at 1am, we can put him back on the bed, but we also have a TV in front of the recliner and we watch TV with the closed caption on. This sounds utterly

ridiculous as I write it, but what the heck. Its not really a recommendation as much a commiseration. Sent on the TELUS Mobility network with BlackBerry Sleepless and sleep studies..Hello All and Happy new year!So I havent post much latelly sice Miss Gabby went back to her old routine of waking up around 1-2 am and stay up until 5-6 am.... and of course not ready to go to

school until 10 so she can catch ( and I can too) some sleep...Melatonin is not working anymore.. she can fall asleep easly at night.. but when I repeat the melatonin at 2 am.. doesnt work anymore...She is not upset but she is "singing" ( you know.. those noises and sounds they make)some nights is just her singing, and throwing everything out of her bed (blankets, pillows.. and more) and some nights. we go to the extreme where she gets naked.... and of course she gets cold and wants her stuff back... and that means mommy has to come in.. change her, dress her up again and put everything back in bed...So tired...so I wonder... anyone has this going on? I mean .. similar? We did a sleep study and she has sleep abnea... got her tonsils and adenoids out..Called our pedi. explained the whole thing.. day routine, bedtime routine and night routine.. he said we are doing everything we can..and he suggested repeat the sleep

study...I seriously hate the sleep study... since she wont sleep anywhere else but her own bed...arggh... ideas please? Alina--------------------------------------------------------------------------------------Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. http://groups.yahoo.com/group/--------------------------------------------

[Guest guest]

Hi, Alina. We were in the exact same boat. My daughter Zoe (age 8) was a great sleeper until age 4, and then started waking up once or twice a night - often staying awake for hours at a time playing and singing in her room, or running around the house. She would only go back to sleep if we went into her bed and lay down with her (we did not let her into our bed because we knew she would stay there until age 20!) We also did the sleep study which resulted in a diagnosis of sleep apnea, and got her tonsils and adenoids removed - this improved her sleep for a few months, but then she reverted back to her old patterns. The dr's did suggest another sleep study, but given that most kids with DS have some sort of sleep apnea, and she already had the surgery,

and I knew she would never keep a CPAP on, we didn't do another study because we figured it was pointless (and we also hated the sleep study - one of the worst nights I have ever had as a parent.)We tried everything - Benadryl, Melatonin, prescription sleep drugs, brushing, and numerous behavioral interventions. Benadryl works, but makes her very drowsy and cranky in the morning.Finally, we did a full nutritional evaluation and learned that she had a strong food sensitivity to Gluten and Dairy, and that she was lacking some nutrients. So, we put her on a 95% Gluten and Dairy free diet and started a regimen of various supplements. This is not very scientific, because it wasn't a controlled "study", but at the same time that we changed her diet/supplements we also started locking her out of our room at night. (We have been told not to lock her in her room

because then her room becomes more like a prison than a place to relax and sleep.) We thought she would scream and bang on our door, and we were prepared for her to do this for the first several nights, but on the first night she tried the door once, banged for a minute, went back to her room, and eventually fell asleep on the floor. After that initial small success, we added to the "program" by installing a tall gate in the hallway, unscrewing all of the lightbulbs in her room and the hallway, locking the bathroom door, locking her closet doors, having her brother lock his bedroom door, removing all of the toys from her room every night, and putting a "white noise" machine in the hallway. This way, she has nothing to do and nowhere to go in the middle of the night, and if she does wake, the white noise machine keeps her from waking up her brother. We also installed a baby monitor camera in her room that

starts recording when she makes noise, so we can track her sleep patterns (because, joyfully, she stopped even trying our door at night so we had no idea whether or how long she was waking). She also has a weighted blanket that she seems to like. (We got it a year ago and it by itself didn't help anything, but does seem to help in combination with the other aspects of the "program"). She is now sleeping through the night with no wakings 9 times out of 10, and if she does wake, it's usually very brief, and she just goes back to bed, and we usually don't hear her. We do have to lie down with her to get her to sleep when she first goes to bed, but we have done this for the past few years and are fine with it as long as we don't have to do it again in the middle of the night. Of course, because we started them at the same time, we don't know whether it's the behavioral or nutritional interventions, or a combination

of both, that have improved her sleep, but we aren't fixing what isn't broken. Something is working and we feel like new people now that we are getting some sleep! And, more importantly, Zoe is much happier, productive and cooperative during the day.I hope this helps. Don't hesitate to email me directly with any questions.Good luck! Fallick