Sleep Apnea

[Guest guest]

What kind of alarm, where did you get it, etc., etc.? Nick likes to

get up during the night and get into stuff (can't have chocolate,

cookies, pop, etc. around and him know about it or he will definitely

try the middle of the night sneak attack). I tried that spy kid stuff

and he figured out a way around it. I tried once putting a chair in

the hallway (to block it) and he just climbed over it. We now have the

bathroom door (laundry room side) locked from the laundry room side so

he can't sneak into the kitchen via the bathroom (provided no one

unlocks it before bedtime). I'm paranoid that he'll get it into his

head some night to go out the front door (the dogs would probably just

go with him and then take off, which would lead him to follow in an

effort to get them back home) and then who knows how far he'd get

before someone realized he was gone. He can be quite quiet/sneaky when

he wants to be.

Cari

Re: Re:Sleep apnea

We have an alarm on his door so we know if he comes out. It's loud and

he

doesn't like LOUD so he only comes out for the bathroom. At least we

know

he's not playing video games or on my computer.

[Guest guest]

Oh.. been there done that. Mav has been caught watching INFOmercials and making

calls in the middle of the night.

THAT was before he found the " girls gone wild " channel and I dread to think of

what calls he might have made at that time.

[Guest guest]

The alarms we got are GREAT! They are stick on.. one on the frame and one on

the door. It's magnetic so when the door gets opened the current is broken and

it's LOUD! We have it on the outside of the boys bedroom door.

We also have one on the inside of each door leading into the garage because I

have another son who has behavior, sneaky, steaing issues and we keep our

snacks/junkfood/treats in an area in the garage. I turn the alarms on when I go

to bed or if my naughty son is in a stealing mode, as soon as HE goes to bed.

We got the alarms for about $20 for a 10 pack at Costco.

They have fancier ones at home depot and radio shack but these meet our needs

perfectly.

I do not know why, but the alarm doesn't awaken anyone else in the house and all

the bedrooms are in an area together. Only my husband and I are awakened.

Nice.

[Guest guest]

Our daughter was in her early teens, when we started using the bi-pap, now

c-pap. She wears it, but it wasn't an easy road towards her consistant use,

the other option for us was a tracheostomy, which we really didn't want to

pursue.

We went through behavior therapy and sticker chart, which was in the long run

successful and thanks to the release of StarWars 1, which was a reward for

keeping the mask on. (whenever that movie was released add one or so years this

was the timeframe we tried it without behavior therapy)

She had tonsills out, adnoids twice removed and her uvula removed, now we

need to check and see if the tonsills on the back of the tongue (usually not

removed) are obstructing her upper airway, just had another sleepstudy after 2-3

years since a sleep pattern changed again. In the beginning we had studies

every 6 months, than every year and whenever we saw a change in sleep pattern.

Quality of life is so different after a good night sleep .

Heike

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

Never miss a thing. Make your homepage.

[Guest guest]

Loree/group,

I would definately just get the C-PAP machine going and just take it easy.

We have been there, done that and got the T-shirt. has now been on C-PAP

with a pressure setting of 9 cm2 for almost a year. She sleeps like a baby now.

We did the T & A surgery, ear tubes x3 and numerous sleep studies. She does

well with her " pretty face " , as she calls it, and even asks for it in the living

room as a sign she's ready to go to bed. Rarely, the C-PAP's come without

humidity anymore but do make sure that you get a machine that has humidity

included. has a RESMED by Respironics. She has a small mask that fits

well. We use distilled water in it to avoid sediment build-up in the water

resivior. A year ago, we had an assessment with Dr. Capone, from Kennedy

Krieger Institute. He's a major DS guru and does lots of research. He said

that 50% of the time T & A surgery does NOT fix the sleep issue with our kids.

He said that our

needed the sleep study b/c he was sure she'd need C-PAP. He was right! Hope

this helps.

Rebekah

An extra little chromosome,

that's all it is, you see.

Where all of you were born with two,

She was blessed with three!

www.nailnwirecrosses.com

http://www.caringbridge.org/visit/laurafish

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

BJ has his name on a waiting list for the sleep study. We had a sleep

oximetry done and all it showed was that his oxygen levels drop to below

normal levels while he sleeps. His tonsils are larger for a DS child,

but not large enough to block breathing etc sitting up. We will have to

wait about 10 months for the sleep study, or they said we can just take

out the T & A now. He has never had tonsillitis so we didnt see the point

in removing them before getting a proper sleep study done. There are

about 185 people on the waiting list I Am told We have had sleepless

nights for near 10 years now- 1 more wont hurt - esp as Jellybean will

become a baby in 8 weeks - so I am gonna be sleep deprived anyways

Aussie Leis- mum to , Natasha, and Jellybean

Some days you are the bug; other days you are the windscreen! Anon.

Jeffery/Rebekah Fish wrote:

> Loree/group,

>

> I would definately just get the C-PAP machine going and just take it

easy. We have been there, done that and got the T-shirt. has now been on

C-PAP with a pressure setting of 9 cm2 for almost a year. She sleeps like a

baby now. We did the T & A surgery, ear tubes x3 and numerous sleep studies.

She does well with her " pretty face " , as she calls it, and even asks for it in

the living room as a sign she's ready to go to bed. Rarely, the C-PAP's come

without humidity anymore but do make sure that you get a machine that has

humidity included. has a RESMED by Respironics. She has a small mask

that fits well. We use distilled water in it to avoid sediment build-up in the

water resivior. A year ago, we had an assessment with Dr. Capone, from

Kennedy Krieger Institute. He's a major DS guru and does lots of research. He

said that 50% of the time T & A surgery does NOT fix the sleep issue with our

kids. He said that our

> needed the sleep study b/c he was sure she'd need C-PAP. He was right! Hope

this helps.

>

> Rebekah

> An extra little chromosome,

> t

[Guest guest]

Hi Loree,

A quick thought. You might consider having Micah assessed by a pediatric ENT

for velopharyngeal insufficiencies or palate issues.

Kids with DS are hypotonic.....this does not only refer to their gross &

fine motor muscle groups......but to ALL groups to include internal....like in

the throat or palate.

A lot of folks do not know that these types of issues are not uncommon in

children with DS. These can be repaired surgically.

We were told that Kali should be on c-pap......I said no thanks. It was an

easy answer for them. It would have been the least invasive. BUT, it would have

been a real PITA and prevented her from doing things like camping out with

girl scouts. The c-pap is noisy & inconvenient.......but Micah is NOT too

young for it if that is the best option for him. C-paps are very helpful.

Knowing Micah has apnea is one thing, but WHY (what is causing) is another

thing. Once you know why.....then it will be easier to decide what the best

treatment will be.

C-paps are used on premature neonates, infants, & kids of all sizes. One of

the hardest things might be getting him to wear it if he finds it too

uncomfortable or if it scares him.....but that is a different issue.

Peace & Joy,

Sandy O, mom to Kali 20yo w/DS & celiac

In a message dated 3/18/2008 8:37:21 A.M. Eastern Daylight Time,

writes:

_Sleep apnea _

(/message/54361;_ylc=X3oDMTJyNG1uMDJnBF9T\

Azk3MzU5NzE1BGdycElkAzIwODA2MzkEZ3Jwc3BJZAMxNzA1Mzk1ODM1BG1zZ

0lkAzU0MzYxBHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEyMDU4NDM4MTQ-)

Posted by: " Loree5@... " _Loree5@... _

(mailto:Loree5@...?Subject= Re:Sleep%20apnea) _loree11727 _

(loree11727)

Mon Mar 17, 2008 7:55 am (PDT)

I know there are children on here with sleep apnea who are using the c-pap.

My question is how old were they when they started to use one. Micah is 7

and 2 and a half years ago we did sleep study on him. Showed moderate sleep

apnea 9didn't need anyone to tell me lol) took his tonsils and adenoids

out...didn't help. Did another study still has sleep apnea. Doctor put him

on

singulair to see if it would help. Seemed to help for a few months and then

back to square one. She wanted to do another sleep study...didn'back to squar

one on him cause he is older...stronger.one on him cause he is older...

back for yet another one but then said that she was going to send him to

orthodontist. Toook him to another sleep center they said it was ridicupus

to put

him through another study. He HAS sleep apnea. Had me call a dentist to find

out about a pallette extender for him. Dentist said he is to little and his

jaw growing so fast they would have to change the device every few weeks.

Said he might be able to have a device called a rapid extender which would

open the mandibular??open the mandibular??<WBR>? quickly. Soundsd painful to

me.

if they could even do that but they keep telling me he is to young for the

c-pap. I am at my wits end. None of us are sleeping and haven't for the past

7 years. I know this is affecting him in school. He is exhausted by the

early afternoon. Any advice guys?

Loree

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

[Guest guest]

Hi Sandy,

The dentist that I spoke with told me to speak with my ENT about a

rapid pallate spreader. (fogot the name of it) will speak with her when we go

back for his routine visit in a few months. I am going to ask her about these

things that you said also. Woulkd she have been able to tell if it was a

possibility of being the problem when she did his tonsilectomy? Constantly

giving him sleep studies is just nuts. It is hard on all of us and really

painful

for him (sensory issues). A funny sidenote...my husband just had to have a

sleep study because he has an irregular heartbeat and they can't figure out

why. He came home the morning after and said he feels so sorry for Micah.

Had no idea what a pita it was. Said it was uncomfortable and he couldn't

sleep. Poor Micah! The things our kids have to go through. It is so good to

hear from you. Keep the faith...I am!

Loree

Hi Loree,

A quick thought. You might consider having Micah assessed by a pediatric ENT

for velopharyngeal insufficiencies or palate issues.

Kids with DS are hypotonic.....this does not only refer to their gross &

fine motor muscle groups......but to ALL groups to include internal....like in

the throat or palate.

A lot of folks do not know that these types of issues are not uncommon in

children with DS. These can be repaired surgically.

We were told that Kali should be on c-pap......I said no thanks. It was an

easy answer for them. It would have been the least invasive. BUT, it would

have been a real PITA and prevented her from doing things like camping out with

girl scouts. The c-pap is noisy & inconvenient.......but Micah is NOT too

young for it if that is the best option for him. C-paps are very helpful.

Knowing Micah has apnea is one thing, but WHY (what is causing) is another

thing. Once you know why.....then it will be easier to decide what the best

treatment will be.

C-paps are used on premature neonates, infants, & kids of all sizes. One of

the hardest things might be getting him to wear it if he finds it too

uncomfortable or if it scares him.....but that is a different issue

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

[Guest guest]

Hi Kristi,

We are in the process of scheduling a sleep study for my son brandon ( 11 ds)

His pedi attended a conference and found that children with ds have a high

chance of having sleep apnea. She returned and decided to test all her patients

with ds. He has always been a restless sleeper but I am not sure if he will

stand for the test.. ( Better yet if he will keep the mask on if needed- took us

6 years to get him to wear his glasses correctly lol). But we will see.

Sent from my Verizon Wireless BlackBerry

sleep apnea

Hi everyone!

I joined the group a few months ago and wanted to thank everyone for being so

supportive of me when I was going through a difficult time. Even though this is

a " virtual " group, I don't feel so alone now because you all are so supportive

and POSITIVE, which is something I haven't found in many other places.

That being said, I wanted to ask if anyone else has dealt with sleep apnea when

their kids were infants. My son with DS is 7 months old and I have known that he

had sleep apnea, but we just had the sleep study done a few days ago which

confirmed it. Our pulmonologist called last night and told us he categorizes it

as " moderate obstructive sleep apnea " with about 16 episodes of apnea an hour.

The good news was that his O2 sats only dropped a little each time and went back

up quickly, so they feel he does not need oxygen at night. We go to see his ENT

in about a month and will probably be scheduling tubes in his ears at that time.

He has fluid in both ears and has never passed a hearing test on his left ear,

so we need to find out if it is permanent hearing loss or just due to the fluid.

But that's a whole other issue! Anyway, the plan at this point is to have the

ENT see if his adenoids need to be removed when they put the tubes in. And if

they don't, we'll go from there.

I'm just curious if anyone else has dealt with this at such a young age and what

treatments you used. typically sleeps on his stomach (he rolls himself

over) and doesn't sound nearly as bad as he did the night of the sleep study,

but it still scares me.

Thanks everyone!

Kristi

Mom to - 4 and - 7 months, DS

[Guest guest]

started a sleep study several weeks ago..hummmm, will have to call

and see why they have not rescheduled.

Anyway, his sleep tech works full time at the National Institute of Health

and only came to this hospital to pick up extra $ on the side. She told me

that when she was working with individuals with autism at the NIH, she

noticed they never entered into REM. She went to her boss and they were

already on it and doing studies. She mentioned something about clinical

trials to help those with autism go into REM and thus dream. does

have PDD, NOS.

never did fall asleep - looking back I know he must have known

seizures were coming because he really fought off relaxing. Poor baby.

[Guest guest]

When we went to Kennedy Kreiger Dr. Capone told us that they found that

people with Down Syndrome have a much shorter REM sleep cycle than

" typical " people. So for those of us who have kids with sleep apnea

they are really deprived of the sleep that they need.

Loree

Re: sleep apnea

started a sleep study several weeks ago..hummmm, will have to

call

and see why they have not rescheduled.

Anyway, his sleep tech works full time at the National Institute of

Health

and only came to this hospital to pick up extra $ on the side. She

told me

that when she was working with individuals with autism at the NIH, she

noticed they never entered into REM. She went to her boss and they

were

already on it and doing studies. She mentioned something about

clinical

trials to help those with autism go into REM and thus dream.

does

have PDD, NOS.

never did fall asleep - looking back I know he must have known

seizures were coming because he really fought off relaxing. Poor baby.

[Guest guest]

When are you going back to KKI? We are scheduled to go next month. I'm

not sure how much longer we are going to use KKI- this may be our last year

of taking there.

[Guest guest]

Hi ,

I don't have SMA, but I do have another form of MD. I have been on a bi-pap for

a few years now. It took me a long time to find a mask that works well enough

for me, and it took me even longer to feel comfortable enough to fall asleep

with it. There are still nights when I don't wear it all night, but my advice to

you is don't give up! Keep working at it, because it really can give you more

energy and mental alertness. Good luck! Dina

Sent on the Sprint® Now Network from my BlackBerry®

Sleep apnea

Happy new year, friends!

I've been really quiet on this list but have a new year's resolution to deal

with the sleep apnea that I've been shamefully ignoring, and I hope you can

help.

I am tired all the time and tested positive for moderate sleep apnea. I have

tried a CPAP twice but can't seem to get to sleep with it. One problem for me is

that I have a hard time breathing through my nose at night, though I'm not sure

why. I tried a mask that goes over nose and mouth and that didn't seem to help.

They think my blood gases are fine other than the apnea episodes during the

night.

Not sure if my problems are SMA-related or not. I have a slow-progressing form

of SMA II and don't have any other significant respiratory problems (just weaker

than average breathing, of course). I'd love advice from any of you with

experience with sleep apnea & SMA! Please respond here or to my individual email

(jessicalehman@...).

Thank you, and may the new year be full of love & laughter for all

[Guest guest]

Hey ,

I have trouble with the masks, too. The only way I can wear one is is I take a

steroid nasal decongestant. If it's really about your nose I recommend meeting

with an ENT.

Also, most SMAers don't have actual sleep apnea; instead it's that our chest

muscles and diaphragm are too weak. Apnea is more of a need for your brain to

be reminded to breathe. If that's the case for you, other types of devices

might work such as a vest or diaphragm belt that reminds you to breathe. I

recommend getting a definitive differentiation between these two possible causes

for problems breathing when you sleep.

Using a CPAP also takes time to get used to (for me at minimum 2 weeks - I

usually use a negative pressure vent), and you may prefer a BiPAP. CPAPs are

much cheaper and are often pushed as the 1st option. I really recommend working

with an old school respiratory therapist who gets neuromuscular diseases. In

the Bay Area there's Laurel at Alta Bates Summit's in-patient Respiratory

Therapy department, Martha at the MDA clinic in San Francisco at California

Pacific Medical Center, and Maureen Leith whom I have access to through

Respironics in Colorado (I lease my ventilator from them).

Let us know how it goes.

Alana

>

> Happy new year, friends!

>

> I've been really quiet on this list but have a new year's resolution to deal

with the sleep apnea that I've been shamefully ignoring, and I hope you can

help.

>

> I am tired all the time and tested positive for moderate sleep apnea. I have

tried a CPAP twice but can't seem to get to sleep with it. One problem for me is

that I have a hard time breathing through my nose at night, though I'm not sure

why. I tried a mask that goes over nose and mouth and that didn't seem to help.

They think my blood gases are fine other than the apnea episodes during the

night.

>

> Not sure if my problems are SMA-related or not. I have a slow-progressing form

of SMA II and don't have any other significant respiratory problems (just weaker

than average breathing, of course). I'd love advice from any of you with

experience with sleep apnea & SMA! Please respond here or to my individual email

(jessicalehman@...).

>

> Thank you, and may the new year be full of love & laughter for all

>

>

>

[Guest guest]

We could get into a discussion of which causes the other, Hypothyrodism or Sleep

Apnea?

I am more pragmatic. Anyone know of literature or know any case history that

indicates that iodine and/or hormone therapy has healed sleep apnea?

Thanks

[Guest guest]

Definitly look into Buteyko Breathing Method, which is as close a cuse to sleep

apnea anything can get I believe... that plus the other suggestions should get

you there!

Here is a good presentation video about it:

http://video.google.com/videoplay?docid=-6346159323094349017

good luck

Max

>

> Can anyone show me an

> article, book or website that

> shows how iodine helps sleep apnea?

>

> I thought I read here there was a link

> through bromide toxicity.

>

> Or any success stories of

> sleep apnea after being

> treated for hypothyroidism?

>

> Be Well,

> Ali

>

[Guest guest]

I healed sleep apnea with Armour thyroid. there are many "diseases" that are actually hormone deficiencies. I realized this when I had to treat my own health probs caused by 30 years of no treatment after a partial thyroidectomy.

Gracia

We could get into a discussion of which causes the other, Hypothyrodism or Sleep Apnea? I am more pragmatic. Anyone know of literature or know any case history that indicates that iodine and/or hormone therapy has healed sleep apnea?Thanks

[Guest guest]

What kind of sleep apnea are we talking about here? Mild? I have severe sleep apnea (81 events/hr) and sleep with a bipap machine.-AngieOn Mar 14, 2012, at 9:12 AM, Max wrote: Definitly look into Buteyko Breathing Method, which is as close a cuse to sleep apnea anything can get I believe... that plus the other suggestions should get you there! Here is a good presentation video about it: http://video.google.com/videoplay?docid=-6346159323094349017 good luck Max > > Can anyone show me an > article, book or website that > shows how iodine helps sleep apnea? > > I thought I read here there was a link > through bromide toxicity. > > Or any success stories of > sleep apnea after being > treated for hypothyroidism? > > Be Well, > Ali > -Angie"The greatest threat to the Republic is that people rarely question the authenticity of political quotes at the bottoms of emails" - Jefferson