Re: sleep apnea..how do you know?

[Guest guest]

Childhood sleep apnea. I found a link for you. woke up several

times during the night and he slept folded over on his lap.He snored

loudly and his upper body moved with his snoring and breathing.

According to the Doc's at our childrens hospital because most kids with

DS have thick tongues that alone can cause sleep apnea.Here are a few

syptonms but check out the link.snoring - loud, squeaky, raspy

nocturnal snorting, gasping, choking (may wake self up)

restless sleep

heavy irregular breathing

excessive perspiring during sleep

severe bedwetting

bad dreams (nightmares)

night terrors

sleeps with mouth open, causing a dry mouth upon awakening

chest retraction during sleep in young children (chest pulls in)

sleeps in strange positions,etc.Childhood sleep Apnea

http://www.stanford.edu/~dement/childapnea.html

>

> Hi, I havnt posted in a while I am mom to Wyatt 4 1/2 yr old with

> DS/Celiac. I was wondering about sleep apnea and what kind of things

I

> should be looking for. The docs did look at his tonsils and adnoids

> and didnt seems to think that they were too big. But he always wakes

> up during the night. We have him on 3 mg melatonin, and he still

wakes

> up. He doesn't stay up that long but but it is still vary hard on

mom

> and dad. He snores, he is grumpy often and still very much needs a

> nap. I myself just found out that I have sleep apnea and I was

> wondering if it was the same test that they use. If it is I have no

> idea how they would attatch all of that stuff to him, I know he would

> be traumatized. Any advice would be appreciated, especially on what

to

> look for.

>

[Guest guest]

I knew it because Elie would not only wake at night, he would wake as if

terrified. Each time, I would lie on the bed with him until he was asleep

again - but he would lean against me, not lay down. Finally, I was counting

his breathes - trying to synchronize my breathing so that it would calm

him. I realized I was getting breathless. He was p[ausing as much as

20-45!!! seconds between breathes. SCARY!! Now he pauses between 10-20 sec

at most between breathes and never wakes once he agrees to sleep. But that

is dependent on the sun going down. At this time of the year he won't go to

sleep until near midnight most nights. Fortunately by next week it will

start getting dark earlier.

> Hi, I havnt posted in a while I am mom to Wyatt 4 1/2 yr old with

> DS/Celiac. I was wondering about sleep apnea and what kind of things I

> should be looking for. The docs did look at his tonsils and adnoids

> and didnt seems to think that they were too big. But he always wakes

> up during the night. We have him on 3 mg melatonin, and he still wakes

> up. He doesn't stay up that long but but it is still vary hard on mom

> and dad. He snores, he is grumpy often and still very much needs a

> nap. I myself just found out that I have sleep apnea and I was

> wondering if it was the same test that they use. If it is I have no

> idea how they would attatch all of that stuff to him, I know he would

> be traumatized. Any advice would be appreciated, especially on what to

> look for.

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Thanks you for posting, they were both helpful. I havn't tried

listening to his breathing in terms of listening for pauses, but I do

know that he snores, makes wierd noises and is a very restless

sleeper always moving and waking. he doesn't wake terrified,

although he does cry, it is not a scared cry. I think that I am

going to ask the doc about tesing him. How do you correct this? I

cant imagine they would give a child a c-pap machine. I know that

for me they want to take my tonsils out. Also what has anyone

noticed or does anyone know the manifestation of this in terms of

behavior? Thanks in advance

Candace

>

> > Hi, I havnt posted in a while I am mom to Wyatt 4 1/2 yr old

with

> > DS/Celiac. I was wondering about sleep apnea and what kind of

things I

> > should be looking for. The docs did look at his tonsils and

adnoids

> > and didnt seems to think that they were too big. But he always

wakes

> > up during the night. We have him on 3 mg melatonin, and he still

wakes

> > up. He doesn't stay up that long but but it is still vary hard on

mom

> > and dad. He snores, he is grumpy often and still very much needs a

> > nap. I myself just found out that I have sleep apnea and I was

> > wondering if it was the same test that they use. If it is I have

no

> > idea how they would attatch all of that stuff to him, I know he

would

> > be traumatized. Any advice would be appreciated, especially on

what to

> > look for.

> >

> >

> >

>

>

>

> --

> Sara - Life is a journey- we choose the path.

>

>

>

[Guest guest]

My son had enlarged tonsils that no one discovered until he had his

heart surgery in 2003.Because my son stayed sick so much we had to

put off the tonsil/adnoids surgery several times.He got them out in

July 2007 and he sleeps so much better and through the night.His

whole body used to move and now he is so still and so quiet that

right after he came home from the hospital his older sister and

myself kept checking on him to see if he was breathing because he was

soooo quiet. That link that I sent you said something about they do

not recommend taking out tonsils/adnoids to help but in my sons case

it sure did help.He is much easier to get up in the morning and he

sleeps through the night peacefully. My son had constant runny noses,

and was sick all year long he has not been sick (1) time since last

summer when he got his tonsils/adnoids out. We are thrilled. I do not

know how they would treat your child without oxygen my son would have

never tolerated any mask on his face.We went for a sleep study and

the Dr. took one look at him and said " If you tell him to lay still

will he " , and I said no.Then she ask " Does he fall asleep on his

own " ? Again I said not until about 2:00 and he does not stay

asleep.The Dr. told me that he would have to be sedated and then they

would not get a true sleep apnea because you breath differently when

you take drugs to make you sleep.So this would not be a true

reading.We were turned away from the sleep study with one done.I

video taped my son asleep and that is how they determined he has

sleep apnea beside what I told them about his sleep habits. I hope

this helps. Cyndi B

>

> Thanks you for posting, they were both helpful. I havn't tried

> listening to his breathing in terms of listening for pauses, but I

do

> know that he snores, makes wierd noises and is a very restless

> sleeper always moving and waking. he doesn't wake terrified,

> although he does cry, it is not a scared cry. I think that I am

> going to ask the doc about tesing him. How do you correct this? I

> cant imagine they would give a child a c-pap machine. I know that

> for me they want to take my tonsils out. Also what has anyone

> noticed or does anyone know the manifestation of this in terms of

> behavior? Thanks in advance

>

> Candace

>

>

>

>

>

>

> >

> > > Hi, I havnt posted in a while I am mom to Wyatt 4 1/2 yr old

> with

> > > DS/Celiac. I was wondering about sleep apnea and what kind of

> things I

> > > should be looking for. The docs did look at his tonsils and

> adnoids

> > > and didnt seems to think that they were too big. But he always

> wakes

> > > up during the night. We have him on 3 mg melatonin, and he

still

> wakes

> > > up. He doesn't stay up that long but but it is still vary hard

on

> mom

> > > and dad. He snores, he is grumpy often and still very much

needs a

> > > nap. I myself just found out that I have sleep apnea and I was

> > > wondering if it was the same test that they use. If it is I

have

> no

> > > idea how they would attatch all of that stuff to him, I know he

> would

> > > be traumatized. Any advice would be appreciated, especially on

> what to

> > > look for.

> > >

> > >

> > >

> >

> >

> >

> > --

> > Sara - Life is a journey- we choose the path.

> >

> >

> >

[Guest guest]

First of all - kids are fitted with c-pap from infant age on!

My biggest problem was the sleep apnea test. When Elie woke up screaming

during the test with all the electrodes on, he pulled everything off. I

don't think he slept 3 hours that night. The doc told me that Elie was

awakening because he was oxygen deprived - it was his recue mode that took

over to save his life.

Taking out Elie's tonisls and adenoids and then re-training him to sleep

were key. The doc told me that his tonsils were almost meeting BEHIND

WHERE THEY COULD SEE IN AN OFFICE VIST! Then his adenoids were shaped like

tadpoles with the tails running down his trachea. No wonder he couldn't

breath.

But it still was a good year after that before he started to sleep thru the

night.

> Thanks you for posting, they were both helpful. I havn't tried

> listening to his breathing in terms of listening for pauses, but I do

> know that he snores, makes wierd noises and is a very restless

> sleeper always moving and waking. he doesn't wake terrified,

> although he does cry, it is not a scared cry. I think that I am

> going to ask the doc about tesing him. How do you correct this? I

> cant imagine they would give a child a c-pap machine. I know that

> for me they want to take my tonsils out. Also what has anyone

> noticed or does anyone know the manifestation of this in terms of

> behavior? Thanks in advance

>

> Candace

>

>

> >

> > > Hi, I havnt posted in a while I am mom to Wyatt 4 1/2 yr old

> with

> > > DS/Celiac. I was wondering about sleep apnea and what kind of

> things I

> > > should be looking for. The docs did look at his tonsils and

> adnoids

> > > and didnt seems to think that they were too big. But he always

> wakes

> > > up during the night. We have him on 3 mg melatonin, and he still

> wakes

> > > up. He doesn't stay up that long but but it is still vary hard on

> mom

> > > and dad. He snores, he is grumpy often and still very much needs a

> > > nap. I myself just found out that I have sleep apnea and I was

> > > wondering if it was the same test that they use. If it is I have

> no

> > > idea how they would attatch all of that stuff to him, I know he

> would

> > > be traumatized. Any advice would be appreciated, especially on

> what to

> > > look for.

> > >

> > >

> > >

> >

> >

> >

> > --

> > Sara - Life is a journey- we choose the path.

> >

> >

> >

[Guest guest]

The typical signs of sleep apnea are not always apparent in children

with Down syndrome, so some doctors believe that all kids with Ds

should have a sleep study. There was a study that showed that the

majority of parents of kids with Ds who said " I don't think he has

apnea " actually had apnea, so it's hard to trust your gut with this

one and know what signs to look for. The obstruction is not always

tonsils and adenoids like it is with typical children and

unfortunately T & A's aren't as successful in curing sleep apnea in kids

with Ds like it is in typical kids (I think typically, the cure rate

is like 99% of something crazy high while in kids with Ds it's either

around half or maybe even less than half? I can't remember the exact

number, I just remember it was significantly lower, so don't quote me!)

Before we diagnosed Darah with sleep apnea, Darah got in weird

positions, but wasn't night waking. Her study revealed apnea and we

had her adenoids removed. Her repeat study revealed the apnea had

gotten worse, and she started night waking. There was a big debate on

taking her tonsils because they weren't enlarged (or only slightly)

and her doctors were fighting about it (she has a heart issue that

sleep apnea is not beneficial with). So, they took her tonsils but

also gave us a CPAP. The CPAP is not happening with her. She has a

repeat study tonight and this will determine our next steps. I just

emailed Sally Shott, MD who is THE ENT in the Down syndrome world.

She's in Cincinnati and she agreed to review Darah's chart for us. We

may be flying up there based on her notes. If you're near Cincinnati,

I strongly recommend seeing her! She presented at the national

conference last year and will also be in Boston.

McKenna

Mom to Darah, 8-11-04 Ds, sensory issues

[Guest guest]

my nathan has severe obstructive sleep apnea. sorry to say that yep, they

have to hook up all them wires etc. nathan has had all his life, we tried

surgery first removed larged tonsils and adnoids. he continued to snore

horribly,

then he use to wake up often, would sit up lots while trying to sleep, and

his behavior use to be pretty bad during the day, starting him on a cpap was

the best thing we could do. several years later he is on a bipap instead and one

can tell if he took his mask off during the night, early. shawna

In a message dated 6/19/2008 3:46:55 P.M. Central Daylight Time,

masoncan5@... writes:

Hi, I havnt posted in a while I am mom to Wyatt 4 1/2 yr old with

DS/Celiac. I was wondering about sleep apnea and what kind of things I

should be looking for. The docs did look at his tonsils and adnoids

and didnt seems to think that they were too big. But he always wakes

up during the night. We have him on 3 mg melatonin, and he still wakes

up. He doesn't stay up that long but but it is still vary hard on mom

and dad. He snores, he is grumpy often and still very much needs a

nap. I myself just found out that I have sleep apnea and I was

wondering if it was the same test that they use. If it is I have no

idea how they would attatch all of that stuff to him, I know he would

be traumatized. Any advice would be appreciated, especially on what to

look for.

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Thanks for everyones responses in termns of my sleep apnea question.

I talked to the sleep disorder doc that I had an appt with yesterday

and we are going to get a refferal for Wyatt just too get checked

out. I just kind of feel like I am missing something and I kind of

think it could be this. I will keep you all informed on how the test

goes, both the study and the results. Thanks

Candace-

-- In , sewshawna@... wrote:

>

> my nathan has severe obstructive sleep apnea. sorry to say that

yep, they

> have to hook up all them wires etc. nathan has had all his life, we

tried

> surgery first removed larged tonsils and adnoids. he continued to

snore horribly,

> then he use to wake up often, would sit up lots while trying to

sleep, and

> his behavior use to be pretty bad during the day, starting him on a

cpap was

> the best thing we could do. several years later he is on a bipap

instead and one

> can tell if he took his mask off during the night, early. shawna

>

>

> In a message dated 6/19/2008 3:46:55 P.M. Central Daylight Time,

> masoncan5@... writes:

>

>

>

>

> Hi, I havnt posted in a while I am mom to Wyatt 4 1/2 yr old with

> DS/Celiac. I was wondering about sleep apnea and what kind of

things I

> should be looking for. The docs did look at his tonsils and

adnoids

> and didnt seems to think that they were too big. But he always

wakes

> up during the night. We have him on 3 mg melatonin, and he still

wakes

> up. He doesn't stay up that long but but it is still vary hard on

mom

> and dad. He snores, he is grumpy often and still very much needs a

> nap. I myself just found out that I have sleep apnea and I was

> wondering if it was the same test that they use. If it is I have

no

> idea how they would attatch all of that stuff to him, I know he

would

> be traumatized. Any advice would be appreciated, especially on what

to

> look for.

>

>

>

>

>

>

>

> **************Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars. (http://autos.aol.com/used?

ncid=aolaut00050000000007)

>

>

>

[Guest guest]

You asked and I skipped the question about bvehavior. A kid who isn't

getting enough sleep and only getting interrupted sleep at that could be

angry, sleepy, off his eating, lash out at people, whiny, hitting, and worst

of all, hit himself. And that is only some of the stuff. Language suffers

(too much effort to talk), digestions suffers - body in stress doesn't

digest foo.)

> Thanks for everyones responses in termns of my sleep apnea question.

> I talked to the sleep disorder doc that I had an appt with yesterday

> and we are going to get a refferal for Wyatt just too get checked

> out. I just kind of feel like I am missing something and I kind of

> think it could be this. I will keep you all informed on how the test

> goes, both the study and the results. Thanks

>

> Candace-

>

> -- In , sewshawna@...

> wrote:

> >

> > my nathan has severe obstructive sleep apnea. sorry to say that

> yep, they

> > have to hook up all them wires etc. nathan has had all his life, we

> tried

> > surgery first removed larged tonsils and adnoids. he continued to

> snore horribly,

> > then he use to wake up often, would sit up lots while trying to

> sleep, and

> > his behavior use to be pretty bad during the day, starting him on a

> cpap was

> > the best thing we could do. several years later he is on a bipap

> instead and one

> > can tell if he took his mask off during the night, early. shawna

> >

> >

> > In a message dated 6/19/2008 3:46:55 P.M. Central Daylight Time,

> > masoncan5@... writes:

> >

> >

> >

> >

> > Hi, I havnt posted in a while I am mom to Wyatt 4 1/2 yr old with

> > DS/Celiac. I was wondering about sleep apnea and what kind of

> things I

> > should be looking for. The docs did look at his tonsils and

> adnoids

> > and didnt seems to think that they were too big. But he always

> wakes

> > up during the night. We have him on 3 mg melatonin, and he still

> wakes

> > up. He doesn't stay up that long but but it is still vary hard on

> mom

> > and dad. He snores, he is grumpy often and still very much needs a

> > nap. I myself just found out that I have sleep apnea and I was

> > wondering if it was the same test that they use. If it is I have

> no

> > idea how they would attatch all of that stuff to him, I know he

> would

> > be traumatized. Any advice would be appreciated, especially on what

> to

> > look for.

> >

> >

> >

> >

> >

> >

> >

> > **************Gas prices getting you down? Search AOL Autos for

> > fuel-efficient used cars. (http://autos.aol.com/used?

> ncid=aolaut00050000000007)

> >

> >

> >

[Guest guest]

Wow - all of those things describe my daughter Amy. We are going for a sleep

test in Toronto sometime soon (waiting for a date). We were to see an ENT and

he said that her tonsils and adnoids were not enlarged so he does not recommend

taking them out. She has had an MRI of her neck done to see if her sleep apnea

is caused by the central nervous system not getting the message to breath. We

have not received those results yet. The reason she has gone for testing is

because I have noticed that when she sleeps she stops breathing for anywhere

from 15-20 secs, takes 2 breathes and then stops again. It is very rythmic and

she does not have loud noises like others. She sleeps folded in half but I

always thought this was because her belly hurt. Now I am second guessing that.

Anyway, I am not there yet but I am wondering what would happen if they won't

keep the CPAP mask on because I really don't see her doing this.

Thanks

Ali

Sara Cohen wrote:

You asked and I skipped the question about bvehavior. A kid who isn't

getting enough sleep and only getting interrupted sleep at that could be

angry, sleepy, off his eating, lash out at people, whiny, hitting, and worst

of all, hit himself. And that is only some of the stuff. Language suffers

(too much effort to talk), digestions suffers - body in stress doesn't

digest foo.)

> Thanks for everyones responses in termns of my sleep apnea question.

> I talked to the sleep disorder doc that I had an appt with yesterday

> and we are going to get a refferal for Wyatt just too get checked

> out. I just kind of feel like I am missing something and I kind of

> think it could be this. I will keep you all informed on how the test

> goes, both the study and the results. Thanks

>

> Candace-

>

> -- In , sewshawna@...

> wrote:

> >

> > my nathan has severe obstructive sleep apnea. sorry to say that

> yep, they

> > have to hook up all them wires etc. nathan has had all his life, we

> tried

> > surgery first removed larged tonsils and adnoids. he continued to

> snore horribly,

> > then he use to wake up often, would sit up lots while trying to

> sleep, and

> > his behavior use to be pretty bad during the day, starting him on a

> cpap was

> > the best thing we could do. several years later he is on a bipap

> instead and one

> > can tell if he took his mask off during the night, early. shawna

> >

> >

> > In a message dated 6/19/2008 3:46:55 P.M. Central Daylight Time,

> > masoncan5@... writes:

> >

> >

> >

> >

> > Hi, I havnt posted in a while I am mom to Wyatt 4 1/2 yr old with

> > DS/Celiac. I was wondering about sleep apnea and what kind of

> things I

> > should be looking for. The docs did look at his tonsils and

> adnoids

> > and didnt seems to think that they were too big. But he always

> wakes

> > up during the night. We have him on 3 mg melatonin, and he still

> wakes

> > up. He doesn't stay up that long but but it is still vary hard on

> mom

> > and dad. He snores, he is grumpy often and still very much needs a

> > nap. I myself just found out that I have sleep apnea and I was

> > wondering if it was the same test that they use. If it is I have

> no

> > idea how they would attatch all of that stuff to him, I know he

> would

> > be traumatized. Any advice would be appreciated, especially on what

> to

> > look for.

> >

> >

> >

> >

> >

> >

> >

> > **************Gas prices getting you down? Search AOL Autos for

> > fuel-efficient used cars. (http://autos.aol.com/used?

> ncid=aolaut00050000000007)

> >

> >

> >