Re: sleep apnea

[Guest guest]

,

yes my husband has it, he did have a cpap machine but we had to give it back

when our insurance ran out...but i feel like Neil needs the sleep study...but I

do not know if he would keep it on..

mzdaisee47 wrote:

,

I have sleep apnea and use a CPAP machine. Janie previously snorted a

lot in her sleep and gasped for breath. She had her tonsils and

adenoids removed and does not obviously do this now, but still wakes

during the night and goes right back to sleep. That indicates she may

still have sleep apnea. She is having a sleep study next Monday to

find out. Do you think someone in your family has it?

NANCY HARNAR

*NOT ALL WHO WANDERS ARE LOST!!

[Guest guest]

hi ,

My son Shane, 4yrs old has sleep apnea and our doc recently advised us to have

his tonsils

removed but we are not too keen. Since you went thru it, is everything ok?

Should we opt for

that? Thanks

Pris

[Guest guest]

My son also had terrible sleep apnea where he awoke many times a night

screaming and only able to sleep while sitting up. When he had his Tonsils

and Adenoids out the surgeon said that the adenoids were very large and

shaped like tadpoles with the tail going down his throat!! Also, he said

that many people with DS have narrow trachea in which ANY SIZE INCREASE in

the adenoids creates a blockage to breathing.

CAVEAT: When Elie had his toncsls out it was NOT an outpatient surgery. HE

spent the night in the pediatric stepdown unit (with me) to monitor that

there wasn't obstruction or bleeding from the surgery. AND the doctor wrote

orders for liquid Tylenol with Codeine - much needd to supress the pain that

Elie could not express without screaming (not a good thing after throat

surgery).

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re: sleep apnea

>Date: Fri, 27 Oct 2006 09:59:16 -0000

>

>hi ,

>

>My son Shane, 4yrs old has sleep apnea and our doc recently advised us to

>have his tonsils

>removed but we are not too keen. Since you went thru it, is everything ok?

>Should we opt for

>that? Thanks

>

>Pris

>

>

>

>

>--------------------------------------------------

>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]

Having Janie's tonsils & adenoids out was not too bad. They kept her in the

hospital 3 days until she would drink. Then she didn't want to eat for a couple

days except stuff she couldn't have (hot dogs for example). But the rewards have

been great. She quit having chest colds. Prior to the surgery she seemed to

chain them together and we spent so much time using the nebulizer. Now she is

really healthy. I would say go for it, but you have to do what feels to you like

the best thing for Shane. We are still waiting for Monday's sleep study and I'm

not sure what comes next because there's no way Janie'd keep a CPAP mask on. She

thinks it's cool to put mine on but as soon as it is running she freaks out.

, the tired Mom!

--------- Re: sleep apnea

>Date: Fri, 27 Oct 2006 09:59:16 -0000

>

>hi ,

>

>My son Shane, 4yrs old has sleep apnea and our doc recently advised us to

>have his tonsils

>removed but we are not too keen. Since you went thru it, is everything ok?

>Should we opt for

>that? Thanks

>

>Pris

>

>

>

>

>--------------------------------------------------

>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]

Sara, Did Elie ever hit himself in the through hard? does this

and I know he had sleep apnea,also sleeping sitting up, and waking

up several times in the night. Risperidal helped the waking up but

we have to get tonsil and adnoids taking out very large. Cyndi

>

> My son also had terrible sleep apnea where he awoke many times a

night

> screaming and only able to sleep while sitting up. When he had

his Tonsils

> and Adenoids out the surgeon said that the adenoids were very

large and

> shaped like tadpoles with the tail going down his throat!! Also,

he said

> that many people with DS have narrow trachea in which ANY SIZE

INCREASE in

> the adenoids creates a blockage to breathing.

>

> CAVEAT: When Elie had his toncsls out it was NOT an outpatient

surgery. HE

> spent the night in the pediatric stepdown unit (with me) to

monitor that

> there wasn't obstruction or bleeding from the surgery. AND the

doctor wrote

> orders for liquid Tylenol with Codeine - much needd to supress the

pain that

> Elie could not express without screaming (not a good thing after

throat

> surgery).

>

>

>

> Sara - Choose to make lemonade, not complain about the lemons.

>

>

>

>

>

> >

> >Reply-To:

> >To:

> >Subject: Re: sleep apnea

> >Date: Fri, 27 Oct 2006 09:59:16 -0000

> >

> >hi ,

> >

> >My son Shane, 4yrs old has sleep apnea and our doc recently

advised us to

> >have his tonsils

> >removed but we are not too keen. Since you went thru it, is

everything ok?

> >Should we opt for

> >that? Thanks

> >

> >Pris

> >

> >

> >

> >

> >--------------------------------------------------

> >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]

Elie has very little self abusive behaviors. When he was waking from sleep

apnea, he just screamed. I slept for ages in bed with him to support him

in a sitting position so he could sleep and not awake screaming.

He was not medicated for sleeping until a few years after the tnosils and

adenoids were out. He needed to learn how to sleep at night and his

wonderful new peds - Dr. Suliman from HErshey, prescribed Benedryl for

sleep. HE later started on Risperdal for his behavior.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re: sleep apnea

>Date: Mon, 30 Oct 2006 04:17:41 -0000

>

>Sara, Did Elie ever hit himself in the through hard? does this

>and I know he had sleep apnea,also sleeping sitting up, and waking

>up several times in the night. Risperidal helped the waking up but

>we have to get tonsil and adnoids taking out very large. Cyndi

> >

> > My son also had terrible sleep apnea where he awoke many times a

>night

> > screaming and only able to sleep while sitting up. When he had

>his Tonsils

> > and Adenoids out the surgeon said that the adenoids were very

>large and

> > shaped like tadpoles with the tail going down his throat!! Also,

>he said

> > that many people with DS have narrow trachea in which ANY SIZE

>INCREASE in

> > the adenoids creates a blockage to breathing.

> >

> > CAVEAT: When Elie had his toncsls out it was NOT an outpatient

>surgery. HE

> > spent the night in the pediatric stepdown unit (with me) to

>monitor that

> > there wasn't obstruction or bleeding from the surgery. AND the

>doctor wrote

> > orders for liquid Tylenol with Codeine - much needd to supress the

>pain that

> > Elie could not express without screaming (not a good thing after

>throat

> > surgery).

> >

> >

> >

> > Sara - Choose to make lemonade, not complain about the lemons.

> >

> >

> >

> >

> >

> > >

> > >Reply-To:

> > >To:

> > >Subject: Re: sleep apnea

> > >Date: Fri, 27 Oct 2006 09:59:16 -0000

> > >

> > >hi ,

> > >

> > >My son Shane, 4yrs old has sleep apnea and our doc recently

>advised us to

> > >have his tonsils

> > >removed but we are not too keen. Since you went thru it, is

>everything ok?

> > >Should we opt for

> > >that? Thanks

> > >

> > >Pris

> > >

> > >

> > >

> > >

> > >--------------------------------------------------

> > >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]

Sara, Thanks for responding.Cyndi

>

> Elie has very little self abusive behaviors. When he was waking

from sleep

> apnea, he just screamed. I slept for ages in bed with him to

support him

> in a sitting position so he could sleep and not awake screaming.

>

> He was not medicated for sleeping until a few years after the

tnosils and

> adenoids were out. He needed to learn how to sleep at night and

his

> wonderful new peds - Dr. Suliman from HErshey, prescribed

Benedryl for

> sleep. HE later started on Risperdal for his behavior.

>

>

>

> Sara - Choose to make lemonade, not complain about the lemons.

>

>

>

>

>

> >

> >Reply-To:

> >To:

> >Subject: Re: sleep apnea

> >Date: Mon, 30 Oct 2006 04:17:41 -0000

> >

> >Sara, Did Elie ever hit himself in the through hard? does

this

> >and I know he had sleep apnea,also sleeping sitting up, and waking

> >up several times in the night. Risperidal helped the waking up but

> >we have to get tonsil and adnoids taking out very large. Cyndi

> > >

> > > My son also had terrible sleep apnea where he awoke many times

a

> >night

> > > screaming and only able to sleep while sitting up. When he had

> >his Tonsils

> > > and Adenoids out the surgeon said that the adenoids were very

> >large and

> > > shaped like tadpoles with the tail going down his throat!!

Also,

> >he said

> > > that many people with DS have narrow trachea in which ANY SIZE

> >INCREASE in

> > > the adenoids creates a blockage to breathing.

> > >

> > > CAVEAT: When Elie had his toncsls out it was NOT an outpatient

> >surgery. HE

> > > spent the night in the pediatric stepdown unit (with me) to

> >monitor that

> > > there wasn't obstruction or bleeding from the surgery. AND the

> >doctor wrote

> > > orders for liquid Tylenol with Codeine - much needd to supress

the

> >pain that

> > > Elie could not express without screaming (not a good thing

after

> >throat

> > > surgery).

> > >

> > >

> > >

> > > Sara - Choose to make lemonade, not complain about the lemons.

> > >

> > >

> > >

> > >

> > >

> > > >From: " cilla_abraham " <cilla_abraham@>

> > > >Reply-To:

> > > >To:

> > > >Subject: Re: sleep apnea

> > > >Date: Fri, 27 Oct 2006 09:59:16 -0000

> > > >

> > > >hi ,

> > > >

> > > >My son Shane, 4yrs old has sleep apnea and our doc recently

> >advised us to

> > > >have his tonsils

> > > >removed but we are not too keen. Since you went thru it, is

> >everything ok?

> > > >Should we opt for

> > > >that? Thanks

> > > >

> > > >Pris

> > > >

> > > >

> > > >

> > > >

> > > >--------------------------------------------------

> > > >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]

sorry soo late been through lots (later email?last couple of weeks--- nathan

has horrible slepp apnea too, and he had his tonsils and adnoids out, it

helped a little maybe, but he still stops breathing an average 20xs and is on a

bipap now but he does a little better with his cpap i think, leaves it on

longer anyways. shawna

[Guest guest]

what is a bipap?

hot springs arkansas

sewshawna@... wrote:

sorry soo late been through lots (later email?last couple of weeks---

nathan

has horrible slepp apnea too, and he had his tonsils and adnoids out, it

helped a little maybe, but he still stops breathing an average 20xs and is on a

bipap now but he does a little better with his cpap i think, leaves it on

longer anyways. shawna

[Guest guest]

a bipap is like a cpap but instead of a continuous air pressure flow, it is

bilevel , high up to the level needed on inhale and lowers to several pressure

amounts lower for easier exhale. It doesnt work for some people, its up to

the doc to h lep decide. shawna

[Guest guest]

Yes, it is sleep apnea that the girls are experiencing. Some of the things you mentioned about sitting up and snoring/gurgle noises during sleep are what the girls do. We are hoping removal of their tonsils/adenoids will help. Surgery is scheduled for Sept 2. I can hardly wait. They will be able to breathe so much easier.

Janice

Subject: Re: A re-introductionTo: Multiples-DS Date: Wednesday, August 13, 2008, 11:38 PM

Janice,What's unusual about a 5- or 6-year-old wanting to take a nap during the day? Some kids are that way.If you want to reduce the nap times, you should find out when they normally want to get up and go to bed and adjust their schedules so they can get the sleep they need. Exercise helps--we all need less sleep with a good daily exercise regimen. (I'm stating the obvious.)The other side of the coin is sleep apnea, common among children with DS. Low tongue muscle tone blocks their throats during the night and they gag, wake up and go back to sleep again. So they don't get uninterrupted sleep during the night. One of the indicators is that children with sleep apnea will fall asleep sitting up during the day. Another is one you see at night: the child will rise up in bed asleep and then fall down again. That helps open their lungs. If you suspect apnea, you could record their sleep

sounds. You will hear gurgles and then snorts and then normal sleep noises. Save the recordings to play back to your pediatrician or otolaryngologist- -it could be lead to a CPAP (continuous positive airway pressure) machine that forces air into the sleeper's lungs. And it could be covered by your health insurance.Al Veerhoff, father to Will & , identical 17-year-olds with DS and some sleep apnea. A re-introductionMy name is Janice and I first joined this group in 2003, just afterour girls were born. I read most postings and asked a few questionsbut computer time became

more rare as the girls became more mobileand an increase in appts.Anyways, they are now 5.5 years and ready to start Kindergarten. Welive in New Brunswick, CANADA so the age and set up of the schoolsystems may be different. I'm ready for them to begin because theyare not challenged to reach their full potential in the Preschoolsetting. The girls will be in separate homeroom classes with her ownTA (teaching assistant). I was hoping they would have had their muchneeded surgery for removal of tonsils and adenoids before schoolstarts but there has been delays with that. (School begins Sept 2)Cassandra's hearing is affected by the amount of "fluid" in her head.I'm hoping I will notice an immediate improvement in her reaction inconversations and better sleeptime. They both are so stuffed up,that they require a nap during the day still. AT 5.5 years of

age,did/does anyone else have a napper?That's all for now. I'm sure I will get into the swing ofexchanging/swapping advice and dilemmas soon enough.Take care all,Janice - mom to Zachary (7.5), na & Cassandra (twins T21, 5.5)wife to Troy

[Guest guest]

-- I'm not sure I shared -- or that you read the blog posts about their recovery -- that and 's surgery went fantastic! Better than expected. But, their recovery was difficult. Starting with dehydration 3 days after the surgery, we went to the ER for IV rehydration where was diagnosed with pneumonia. He spent 3 days in hospital, got home and STILL would not drink. I syringed 5ml of gatorade into his mouth every 20 minutes during waking hours to ensure he would not dehydrate again. As it turns out, the "reason" was the arch beside his uvula was bruised during the surgery (the tube used to stretch that area open so the surgeon has access to the adenoids was too big for him and left him sorer than ... hence, he had a

longer healing time. In the end, they are sleeping through the night and not stop-breathing anymore (our typical stop-breathing episode lasted 12-15 seconds and happened many multiple times each night throughout the night. Since their surgery/recovery, they sleep through the night, barely snoring at all, hardly stirring and really not waking up at all. It's phenomenal! (Which the ENT assured me would be the result... and he was 100% right!) I am so pleased, despite the tough recovery, I would absolutely do it again!

Happy you added my blog. Glad the information helped. Good luck with it!

xo maggie

Mom to Olivia (01) and & (05 - IDs w/ DS)

To: Multiples-DS Sent: Thursday, April 23, 2009 6:12:19 PMSubject: Re: Sleep apnea

Thanks! I've added your blog to ours...I hope you don't mind. This is great info, thanks! Sleep apnea

I know it wasn't that long ago that there was a discussion regarding sleep apnea and t & a. has been hospitalized twice since January. While she was in we noticed her O2 levels would dip when sleeping, and she often gasped for air. Our pedi wants to do a sleep study. I'd like to hear some of your experiences with sleep apnea and t & a.Thanks,-mom to (ds) and Caden 27 monthsSent from my iPhone

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[Guest guest]

Adrienne also had a t & a last year. Her ENT is very experienced with DS and based on the size of her tonsils and constant colds, we also went ahead and did the surgery without a sleep study - she said we could do a study, but in her mind, the result would be the same. Adrienne did well with surgery, we spent one night for IV fluids and IV steroids. The first week was a rough, but keeping her medicated every four hours - even through the night was the key. I'm very glad we did it - she had a boost in her speech after the surgery and even though this winter has been tough with colds, I know it would have been worse without! She sleeps well for the most part, definitely not as restless/all over the bed and very little snoring. Good luck.

Cyndy

Madeline (12), Kayley & Adrienne ds (4 )

To: Multiples-DS Sent: Thursday, April 23, 2009 7:06:07 PMSubject: Re: Sleep apnea

-- I'm not sure I shared -- or that you read the blog posts about their recovery -- that and 's surgery went fantastic! Better than expected. But, their recovery was difficult. Starting with dehydration 3 days after the surgery, we went to the ER for IV rehydration where was diagnosed with pneumonia. He spent 3 days in hospital, got home and STILL would not drink. I syringed 5ml of gatorade into his mouth every 20 minutes during waking hours to ensure he would not dehydrate again. As it turns out, the "reason" was the arch beside his uvula was bruised during the surgery (the tube used to stretch that area open so the surgeon has access to the adenoids was too big for him and left him sorer than ... hence, he had a longer healing time. In the end, they are sleeping through the night and not stop-breathing anymore (our typical stop-breathing episode lasted 12-15 seconds and

happened many multiple times each night throughout the night. Since their surgery/recovery, they sleep through the night, barely snoring at all, hardly stirring and really not waking up at all. It's phenomenal! (Which the ENT assured me would be the result... and he was 100% right!) I am so pleased, despite the tough recovery, I would absolutely do it again!

Happy you added my blog. Glad the information helped. Good luck with it!

xo maggie

Mom to Olivia (01) and & (05 - IDs w/ DS)

From: Shipley <TylerLrnaol (DOT) com>To: Multiples-DS@ yahoogroups. comSent: Thursday, April 23, 2009 6:12:19 PMSubject: Re: Sleep apnea

Thanks! I've added your blog to ours...I hope you don't mind. This is great info, thanks! Sleep apnea

I know it wasn't that long ago that there was a discussion regarding sleep apnea and t & a. has been hospitalized twice since January. While she was in we noticed her O2 levels would dip when sleeping, and she often gasped for air. Our pedi wants to do a sleep study. I'd like to hear some of your experiences with sleep apnea and t & a.Thanks,-mom to (ds) and Caden 27 monthsSent from my iPhone

Big savings on Dell XPS Laptops and Desktops!

Big savings on Dell XPS Laptops and Desktops!