sleep apnea and t and

May 7, 2005

Hi, I wrote a couple months ago about Cassie having sleep apnea. I have

been twice to a specialist ENT at the other end of the state that I live in in

Maine. I have been to a pediatrician that see a lot of kids with Down

Syndrome and also to an ENT in the next town over. Have had a sleep apnea

doctor

that does older people 10 and up read the sleep study and gotten his opinion.

I am very confused and have no idea what to do any more and neither does her

regular doctor.

Here is what I am being told. The first ENT said he won't do it that she

should just see an endocrinologist because she is overweight. She weighs 86

lbs. We did all the thyroid tests and X-rays and everything.

Then we went to the Pediatric Pulmonlogist and he said she has a rather good

build for a child with Downs and that he is very disappointed in the doctor

in Portland and that both doctors know that the first step in a child with

sleep apnea is to do a T & A. That I need to find someone that will do it no

matter what.

So we went to a regular ENT in the next town over yesterday and he refuses

to do it also saying again that she is overweight and that he is worried that

in the post care she will have trouble because she is very uncooperative and

it could cause bleeding if we have to force her mouth open and such. Which I

can understand that a little more because she is very very stubborn at times

and it has taken two people to hold her down at times.

I have tried to address the fact that she is very hyper and such with

doctors but I just get the brush off. That that is just how kids with Down

Syndrome

are. Well I have found it very difficult at times with taking her places

because of this and just don't know what to do.

I was told to take her to a neurologist but they will not see her that they

just do the sleep study and nothing past that. Any ideas or help would be

greatly appreciated. I just don't know what to do next.

Tammy

mom to 5 including Cassie 7 DS

May 8, 2005

Hi

Sleep apnea can be a very dangerous thing, even in children. My advice is

to pursue it until you have a firm diagnosis. had two sleep studies

done before they put him on the sleep apnea machine (CPAP) which is a great

little device that helps him with the apnea and which he tolerates well

(although they said he wouldn't). Every night when we hook him up, he makes

a joke of it and calls it " Blowing. " Sleep apnea can affect a number of

things, ranging from the heart to behavior at school.

Dad to , Kristi, (all three Down syndrome) and (Cri du

chat)

Husband to C. in Mo.

Uncle Daddy to and in Calif. (whom and I will be going to

visit this week for 3 1/2 week!)

sleep apnea and t and

> Hi, I wrote a couple months ago about Cassie having sleep apnea. I have

> been twice to a specialist ENT at the other end of the state that I live

in in

> Maine. I have been to a pediatrician that see a lot of kids with Down

> Syndrome and also to an ENT in the next town over. Have had a sleep apnea

doctor

> that does older people 10 and up read the sleep study and gotten his

opinion.

>

> I am very confused and have no idea what to do any more and neither does

her

> regular doctor.

>

> Here is what I am being told. The first ENT said he won't do it that she

> should just see an endocrinologist because she is overweight. She weighs

86

> lbs. We did all the thyroid tests and X-rays and everything.

>

> Then we went to the Pediatric Pulmonlogist and he said she has a rather

good

> build for a child with Downs and that he is very disappointed in the

doctor

> in Portland and that both doctors know that the first step in a child with

> sleep apnea is to do a T & A. That I need to find someone that will do it

no

> matter what.

>

> So we went to a regular ENT in the next town over yesterday and he refuses

> to do it also saying again that she is overweight and that he is worried

that

> in the post care she will have trouble because she is very uncooperative

and

> it could cause bleeding if we have to force her mouth open and such.

Which I

> can understand that a little more because she is very very stubborn at

times

> and it has taken two people to hold her down at times.

>

> I have tried to address the fact that she is very hyper and such with

> doctors but I just get the brush off. That that is just how kids with Down

Syndrome

> are. Well I have found it very difficult at times with taking her places

> because of this and just don't know what to do.

>

> I was told to take her to a neurologist but they will not see her that

they

> just do the sleep study and nothing past that. Any ideas or help would be

> greatly appreciated. I just don't know what to do next.

>

> Tammy

> mom to 5 including Cassie 7 DS

>

May 8, 2005

Hi

Sleep apnea can be a very dangerous thing, even in children. My advice is

to pursue it until you have a firm diagnosis. had two sleep studies

done before they put him on the sleep apnea machine (CPAP) which is a great

little device that helps him with the apnea and which he tolerates well

(although they said he wouldn't). Every night when we hook him up, he makes

a joke of it and calls it " Blowing. " Sleep apnea can affect a number of

things, ranging from the heart to behavior at school.

Dad to , Kristi, (all three Down syndrome) and (Cri du

chat)

Husband to C. in Mo.

Uncle Daddy to and in Calif. (whom and I will be going to

visit this week for 3 1/2 week!)

sleep apnea and t and

> Hi, I wrote a couple months ago about Cassie having sleep apnea. I have

> been twice to a specialist ENT at the other end of the state that I live

in in

> Maine. I have been to a pediatrician that see a lot of kids with Down

> Syndrome and also to an ENT in the next town over. Have had a sleep apnea

doctor

> that does older people 10 and up read the sleep study and gotten his

opinion.

>

> I am very confused and have no idea what to do any more and neither does

her

> regular doctor.

>

> Here is what I am being told. The first ENT said he won't do it that she

> should just see an endocrinologist because she is overweight. She weighs

86

> lbs. We did all the thyroid tests and X-rays and everything.

>

> Then we went to the Pediatric Pulmonlogist and he said she has a rather

good

> build for a child with Downs and that he is very disappointed in the

doctor

> in Portland and that both doctors know that the first step in a child with

> sleep apnea is to do a T & A. That I need to find someone that will do it

no

> matter what.

>

> So we went to a regular ENT in the next town over yesterday and he refuses

> to do it also saying again that she is overweight and that he is worried

that

> in the post care she will have trouble because she is very uncooperative

and

> it could cause bleeding if we have to force her mouth open and such.

Which I

> can understand that a little more because she is very very stubborn at

times

> and it has taken two people to hold her down at times.

>

> I have tried to address the fact that she is very hyper and such with

> doctors but I just get the brush off. That that is just how kids with Down

Syndrome

> are. Well I have found it very difficult at times with taking her places

> because of this and just don't know what to do.

>

> I was told to take her to a neurologist but they will not see her that

they

> just do the sleep study and nothing past that. Any ideas or help would be

> greatly appreciated. I just don't know what to do next.

>

> Tammy

> mom to 5 including Cassie 7 DS

>

May 8, 2005

Tammy,

Can the pulmonlogist go to bat for you on this issue? I would talk to him/her

and ask for them to rally the other professionals to help your child. If not, I

would ask the insurance company for someone else you can take your child to and

get another opinion even if it is out of state.

Good luck to you! Bridget had the T & A because her tonsils were large. She had

a hard time immediately after surgery and with drinking enough during recovery.

We made it through. I hope you can get some help soon.

(mom to Bridget 12) in SC

sleep apnea and t and

Hi, I wrote a couple months ago about Cassie having sleep apnea. I have

been twice to a specialist ENT at the other end of the state that I live in

in

Maine. I have been to a pediatrician that see a lot of kids with Down

Syndrome and also to an ENT in the next town over. Have had a sleep apnea

doctor

that does older people 10 and up read the sleep study and gotten his opinion.

I am very confused and have no idea what to do any more and neither does her

regular doctor.

Here is what I am being told. The first ENT said he won't do it that she

should just see an endocrinologist because she is overweight. She weighs 86

lbs. We did all the thyroid tests and X-rays and everything.

Then we went to the Pediatric Pulmonlogist and he said she has a rather good

build for a child with Downs and that he is very disappointed in the doctor

in Portland and that both doctors know that the first step in a child with

sleep apnea is to do a T & A. That I need to find someone that will do it no

matter what.

So we went to a regular ENT in the next town over yesterday and he refuses

to do it also saying again that she is overweight and that he is worried that

in the post care she will have trouble because she is very uncooperative and

it could cause bleeding if we have to force her mouth open and such. Which I

can understand that a little more because she is very very stubborn at times

and it has taken two people to hold her down at times.

I have tried to address the fact that she is very hyper and such with

doctors but I just get the brush off. That that is just how kids with Down

Syndrome

are. Well I have found it very difficult at times with taking her places

because of this and just don't know what to do.

I was told to take her to a neurologist but they will not see her that they

just do the sleep study and nothing past that. Any ideas or help would be

greatly appreciated. I just don't know what to do next.

Tammy

mom to 5 including Cassie 7 DS

May 8, 2005

Tammy,

Can the pulmonlogist go to bat for you on this issue? I would talk to him/her

and ask for them to rally the other professionals to help your child. If not, I

would ask the insurance company for someone else you can take your child to and

get another opinion even if it is out of state.

Good luck to you! Bridget had the T & A because her tonsils were large. She had

a hard time immediately after surgery and with drinking enough during recovery.

We made it through. I hope you can get some help soon.

(mom to Bridget 12) in SC

sleep apnea and t and

Hi, I wrote a couple months ago about Cassie having sleep apnea. I have

been twice to a specialist ENT at the other end of the state that I live in

in

Maine. I have been to a pediatrician that see a lot of kids with Down

Syndrome and also to an ENT in the next town over. Have had a sleep apnea

doctor

that does older people 10 and up read the sleep study and gotten his opinion.

I am very confused and have no idea what to do any more and neither does her

regular doctor.

Here is what I am being told. The first ENT said he won't do it that she

should just see an endocrinologist because she is overweight. She weighs 86

lbs. We did all the thyroid tests and X-rays and everything.

Then we went to the Pediatric Pulmonlogist and he said she has a rather good

build for a child with Downs and that he is very disappointed in the doctor

in Portland and that both doctors know that the first step in a child with

sleep apnea is to do a T & A. That I need to find someone that will do it no

matter what.

So we went to a regular ENT in the next town over yesterday and he refuses

to do it also saying again that she is overweight and that he is worried that

in the post care she will have trouble because she is very uncooperative and

it could cause bleeding if we have to force her mouth open and such. Which I

can understand that a little more because she is very very stubborn at times

and it has taken two people to hold her down at times.

I have tried to address the fact that she is very hyper and such with

doctors but I just get the brush off. That that is just how kids with Down

Syndrome

are. Well I have found it very difficult at times with taking her places

because of this and just don't know what to do.

I was told to take her to a neurologist but they will not see her that they

just do the sleep study and nothing past that. Any ideas or help would be

greatly appreciated. I just don't know what to do next.

Tammy

mom to 5 including Cassie 7 DS

May 9, 2005

Does the ENT think your daughter's weight is what is causing the Sleep Apnea and

why he/she doesn't want to do the T & A? How bad is her sleep apnea - does she

completely stop breathing or just snore? My son had a Tonsillectomy, Adenoid

reduction (rather than complete removal), and mastoidectomy for recurrent

chronic ear infection (with drainage) and sleep apnea. He had no problems with

the surgery (no bleeding, no dehydration) but is a lot younger than your

daughter. He was still takng a bottle and found confort in it so that is how he

stayed hydrated.

I've heard that there are very good ENT's at Boston Children's Hospital who have

experience with kids with DS. Is it too far for you to travel to Boston to get

a second opinion?

Barbara Misener - Mother to Mathias - age 2 1/2

mom2bridget <mom2bridget@...> wrote:

Tammy,

Can the pulmonlogist go to bat for you on this issue? I would talk to him/her

and ask for them to rally the other professionals to help your child. If not, I

would ask the insurance company for someone else you can take your child to and

get another opinion even if it is out of state.

Good luck to you! Bridget had the T & A because her tonsils were large. She had

a hard time immediately after surgery and with drinking enough during recovery.

We made it through. I hope you can get some help soon.

(mom to Bridget 12) in SC

sleep apnea and t and

Hi, I wrote a couple months ago about Cassie having sleep apnea. I have

been twice to a specialist ENT at the other end of the state that I live in

in

Maine. I have been to a pediatrician that see a lot of kids with Down

Syndrome and also to an ENT in the next town over. Have had a sleep apnea

doctor

that does older people 10 and up read the sleep study and gotten his opinion.

I am very confused and have no idea what to do any more and neither does her

regular doctor.

Here is what I am being told. The first ENT said he won't do it that she

should just see an endocrinologist because she is overweight. She weighs 86

lbs. We did all the thyroid tests and X-rays and everything.

Then we went to the Pediatric Pulmonlogist and he said she has a rather good

build for a child with Downs and that he is very disappointed in the doctor

in Portland and that both doctors know that the first step in a child with

sleep apnea is to do a T & A. That I need to find someone that will do it no

matter what.

So we went to a regular ENT in the next town over yesterday and he refuses

to do it also saying again that she is overweight and that he is worried that

in the post care she will have trouble because she is very uncooperative and

it could cause bleeding if we have to force her mouth open and such. Which I

can understand that a little more because she is very very stubborn at times

and it has taken two people to hold her down at times.

I have tried to address the fact that she is very hyper and such with

doctors but I just get the brush off. That that is just how kids with Down

Syndrome

are. Well I have found it very difficult at times with taking her places

because of this and just don't know what to do.

I was told to take her to a neurologist but they will not see her that they

just do the sleep study and nothing past that. Any ideas or help would be

greatly appreciated. I just don't know what to do next.

Tammy

mom to 5 including Cassie 7 DS

May 9, 2005

Does the ENT think your daughter's weight is what is causing the Sleep Apnea and

why he/she doesn't want to do the T & A? How bad is her sleep apnea - does she

completely stop breathing or just snore? My son had a Tonsillectomy, Adenoid

reduction (rather than complete removal), and mastoidectomy for recurrent

chronic ear infection (with drainage) and sleep apnea. He had no problems with

the surgery (no bleeding, no dehydration) but is a lot younger than your

daughter. He was still takng a bottle and found confort in it so that is how he

stayed hydrated.

I've heard that there are very good ENT's at Boston Children's Hospital who have

experience with kids with DS. Is it too far for you to travel to Boston to get

a second opinion?

Barbara Misener - Mother to Mathias - age 2 1/2

mom2bridget <mom2bridget@...> wrote:

Tammy,

Can the pulmonlogist go to bat for you on this issue? I would talk to him/her

and ask for them to rally the other professionals to help your child. If not, I

would ask the insurance company for someone else you can take your child to and

get another opinion even if it is out of state.

Good luck to you! Bridget had the T & A because her tonsils were large. She had

a hard time immediately after surgery and with drinking enough during recovery.

We made it through. I hope you can get some help soon.

(mom to Bridget 12) in SC

sleep apnea and t and

Hi, I wrote a couple months ago about Cassie having sleep apnea. I have

been twice to a specialist ENT at the other end of the state that I live in

in

Maine. I have been to a pediatrician that see a lot of kids with Down

Syndrome and also to an ENT in the next town over. Have had a sleep apnea

doctor

that does older people 10 and up read the sleep study and gotten his opinion.

I am very confused and have no idea what to do any more and neither does her

regular doctor.

Here is what I am being told. The first ENT said he won't do it that she

should just see an endocrinologist because she is overweight. She weighs 86

lbs. We did all the thyroid tests and X-rays and everything.

Then we went to the Pediatric Pulmonlogist and he said she has a rather good

build for a child with Downs and that he is very disappointed in the doctor

in Portland and that both doctors know that the first step in a child with

sleep apnea is to do a T & A. That I need to find someone that will do it no

matter what.

So we went to a regular ENT in the next town over yesterday and he refuses

to do it also saying again that she is overweight and that he is worried that

in the post care she will have trouble because she is very uncooperative and

it could cause bleeding if we have to force her mouth open and such. Which I

can understand that a little more because she is very very stubborn at times

and it has taken two people to hold her down at times.

I have tried to address the fact that she is very hyper and such with

doctors but I just get the brush off. That that is just how kids with Down

Syndrome

are. Well I have found it very difficult at times with taking her places

because of this and just don't know what to do.

I was told to take her to a neurologist but they will not see her that they

just do the sleep study and nothing past that. Any ideas or help would be

greatly appreciated. I just don't know what to do next.

Tammy

mom to 5 including Cassie 7 DS

May 9, 2005

Sounds like some medical " passing the buck " as well. I think most of us

were told that a T (and possibly A) were the first step to try and

cure/reduce sleep apnea. I think that I wouldn't go back to the the ENT

who is refusing, but rather seek a second opinion from a larger medical

community who perhaps has more experience with kids with DS..... I agree

with Barbara..... go to Boston! The possibility of Cassie not

cooperating post-op isn't (IMHO) a reason to not do the T & A (if she

needs it, she needs it, and it sounds like most everyone agrees she

needs it!)..... they should keep her o/n anyway, and don't let them

discharge her until she's drinking adequately. Why would you have to

hold her down and perhaps cause bleeding.... to make her drink?

Certainly, if things got sooooooo bad that she was getting dehydrated,

and you could find no other way to hydrate her, she could get an IV

rather than being held down and forced to drink..... I'd worry again

about an ENT who even thinks about holding a kid down and trying to

force liquids down their freshly sutured throat!

had her Tonsils out sometime around age 4, adenods reduced,

and tubes placed in her ears. She was very resistant to eating or

drinking post op (though we did see many kids come out, have a popsicle,

go to the bathroom, and then leave....... just not our kid, LOL).

Anyway, we had to fight to get her a room (the Children's Hospital was

full), and she stayed until she ate and drank (about 24 hours). One of

the rounding docs said her son refused to eat/drink for 4 days after his

T & A, which I think she found rather embarassing...... I just prayed that

it wouldn't be us.

Good luck. It sound like you are trying to do all the right things, and

are getting no help from her doctors.

, mom to (9), (7 DS), and (5)

barbara misener wrote:

>Does the ENT think your daughter's weight is what is causing the Sleep Apnea

and why he/she doesn't want to do the T & A? How bad is her sleep apnea - does

she completely stop breathing or just snore? My son had a Tonsillectomy,

Adenoid reduction (rather than complete removal), and mastoidectomy for

recurrent chronic ear infection (with drainage) and sleep apnea. He had no

problems with the surgery (no bleeding, no dehydration) but is a lot younger

than your daughter. He was still takng a bottle and found confort in it so that

is how he stayed hydrated.

>

>I've heard that there are very good ENT's at Boston Children's Hospital who

have experience with kids with DS. Is it too far for you to travel to Boston to

get a second opinion?

>

>Barbara Misener - Mother to Mathias - age 2 1/2

>mom2bridget <mom2bridget@...> wrote:

>Tammy,

>

>Can the pulmonlogist go to bat for you on this issue? I would talk to him/her

and ask for them to rally the other professionals to help your child. If not, I

would ask the insurance company for someone else you can take your child to and

get another opinion even if it is out of state.

>

>Good luck to you! Bridget had the T & A because her tonsils were large. She had

a hard time immediately after surgery and with drinking enough during recovery.

We made it through. I hope you can get some help soon.

>

> (mom to Bridget 12) in SC

>

> sleep apnea and t and

>

> Hi, I wrote a couple months ago about Cassie having sleep apnea. I have

> been twice to a specialist ENT at the other end of the state that I live in

in

> Maine. I have been to a pediatrician that see a lot of kids with Down

> Syndrome and also to an ENT in the next town over. Have had a sleep apnea

doctor

> that does older people 10 and up read the sleep study and gotten his

opinion.

>

> I am very confused and have no idea what to do any more and neither does her

> regular doctor.

>

> Here is what I am being told. The first ENT said he won't do it that she

> should just see an endocrinologist because she is overweight. She weighs 86

> lbs. We did all the thyroid tests and X-rays and everything.

>

> Then we went to the Pediatric Pulmonlogist and he said she has a rather good

> build for a child with Downs and that he is very disappointed in the doctor

> in Portland and that both doctors know that the first step in a child with

> sleep apnea is to do a T & A. That I need to find someone that will do it no

> matter what.

>

> So we went to a regular ENT in the next town over yesterday and he refuses

> to do it also saying again that she is overweight and that he is worried that

> in the post care she will have trouble because she is very uncooperative and

> it could cause bleeding if we have to force her mouth open and such. Which I

> can understand that a little more because she is very very stubborn at times

> and it has taken two people to hold her down at times.

>

> I have tried to address the fact that she is very hyper and such with

> doctors but I just get the brush off. That that is just how kids with Down

Syndrome

> are. Well I have found it very difficult at times with taking her places

> because of this and just don't know what to do.

>

> I was told to take her to a neurologist but they will not see her that they

> just do the sleep study and nothing past that. Any ideas or help would be

> greatly appreciated. I just don't know what to do next.

>

> Tammy

> mom to 5 including Cassie 7 DS

>

May 9, 2005

I don't know how they can determine who is going to be cooperative after their

surgery. I heard all the horror stories about T & A too, but Noah was eating

Popsicles and ice cream within hours, and solid food the next day! Go figure.

Karla in Texas

Re: sleep apnea and t and