Re: hypoventilation/awake state problems

[Guest guest]

His breathing has become an

>

>issue not only when he is sleeping but awake as well. Thanks for any info.

Barbara,

My son sleeps vented and uses his vent only when absolutely needed when

awake. He does stop breathing when he's awake and he also hypoventilates

when awake. As a result, he is monitored 24 hours a day and on is on oxygen

continuous. He also takes diaphragmatic spasms which concern me because he

can't get a good breath when they occur. Thankfully baclofen helps....

What sort of awake state breathing problems does he have? There are so many

variables such as airway related, cardiac related, brain related, fatigue

related. Unfortunately my son has all of them, but his pacer helps with the

cardiac related end for the most part.

Cheri in NC

[Guest guest]

His breathing has become an

>

>issue not only when he is sleeping but awake as well. Thanks for any info.

Barbara,

My son sleeps vented and uses his vent only when absolutely needed when

awake. He does stop breathing when he's awake and he also hypoventilates

when awake. As a result, he is monitored 24 hours a day and on is on oxygen

continuous. He also takes diaphragmatic spasms which concern me because he

can't get a good breath when they occur. Thankfully baclofen helps....

What sort of awake state breathing problems does he have? There are so many

variables such as airway related, cardiac related, brain related, fatigue

related. Unfortunately my son has all of them, but his pacer helps with the

cardiac related end for the most part.

Cheri in NC

[Guest guest]

Hi Cheri,

My son will complain about not feeling well and his breathing becomes

labored and he fights for each breath, sometimes it seems like he is choking

on his own phlegm. He usually makes noises of sucking in air but no exhale,

this may last for a minute or two. On occasions his eyes will become fixed,

become un-responsive, have slight body tremors, it may stop there and he

begans to breath right again but he usually loses his bladder. On occassion

he has lost consciousness. Seizures have been ruled out and no one really

knows what is going on. These attacks occur at night as well while he is

sleeping. What are the spasms your son has? Thanks for your response.

Barbara

>From: Clcr100@...

>Reply-To: Mito

>To: Mito

>Subject: Re: hypoventilation/awake state problems

>Date: Thu, 26 Dec 2002 11:20:11 EST

>

>

>

>

> His breathing has become an

> >

> >issue not only when he is sleeping but awake as well. Thanks for any

>info.

>

>

>Barbara,

>

>My son sleeps vented and uses his vent only when absolutely needed when

>awake. He does stop breathing when he's awake and he also hypoventilates

>when awake. As a result, he is monitored 24 hours a day and on is on

>oxygen

>continuous. He also takes diaphragmatic spasms which concern me because he

>can't get a good breath when they occur. Thankfully baclofen helps....

>

>What sort of awake state breathing problems does he have? There are so many

>variables such as airway related, cardiac related, brain related, fatigue

>related. Unfortunately my son has all of them, but his pacer helps with

>the

>cardiac related end for the most part.

>

>Cheri in NC

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[Guest guest]

>What are the spasms your son has?

He gets pains over the diaphragm area (either side). It will suddenly come

on unexpectedly and he can't take get a good breath until it subsides.

Cheri

[Guest guest]

>What are the spasms your son has?

He gets pains over the diaphragm area (either side). It will suddenly come

on unexpectedly and he can't take get a good breath until it subsides.

Cheri

[Guest guest]

This may be part of what is happening to your son, but it

sounds different than what I experienced as I never felt phlegm in my

throat, but did cough alot after it was over. I just never felt congested

beforehand.

will go through these periods of maybe a few days or so...no cold symptoms...but has this push-cough kinda thing...it sounds unusual...I even taped it for a doc and he refused to listen to it...we changed to a different pulmonologist in the group and he wants to hear it next time it happens...it is pretty bad when it happens...he will do this cough thing about 20 times in five minutes...I timed it once. I never know what to do for it...cough medicine seems to make it worse...and there aren't any cold symptoms, maybe this is what he has...would love to know if that the same to you?

deb

[Guest guest]

Barbara, I don't know what is happening to your child, but I can tell you

that when I used to be SEVERELY asthmatic (almost died a couple of times) I

would feel very similar. You concentrate on breathing and nothing else. It

becomes quite painful, the lack of oxygen, all over the body. You do lose

bladder control if it goes on long enough. I never lost consciousness, but

came close. This may be part of what is happening to your son, but it

sounds different than what I experienced as I never felt phlegm in my

throat, but did cough alot after it was over. I just never felt congested

beforehand.

this probably is no help, sorry

cara

Re: hypoventilation/awake state problems

>Date: Thu, 26 Dec 2002 11:20:11 EST

>

>

>

>

> His breathing has become an

> >

> >issue not only when he is sleeping but awake as well. Thanks for any

>info.

>

>

>Barbara,

>

>My son sleeps vented and uses his vent only when absolutely needed when

>awake. He does stop breathing when he's awake and he also hypoventilates

>when awake. As a result, he is monitored 24 hours a day and on is on

>oxygen

>continuous. He also takes diaphragmatic spasms which concern me because he

>can't get a good breath when they occur. Thankfully baclofen helps....

>

>What sort of awake state breathing problems does he have? There are so many

>variables such as airway related, cardiac related, brain related, fatigue

>related. Unfortunately my son has all of them, but his pacer helps with

>the

>cardiac related end for the most part.

>

>Cheri in NC

_________________________________________________________________

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Please contact mito-owner with any problems or questions.

[Guest guest]

They tried albuterol and an inhaler but made no difference.--

- In Mito , Clcr100@a... wrote:

>

> In a message dated 12/27/02 12:13:37 AM, bhoffman58@h... writes:

>

> > sometimes it seems like he is choking

> >on his own phlegm.

>

>

> Have the docs ruled reactive airway related? All of the symptoms

together

> don't sound like a reactive airway type of situation, but perhaps

it could be

> part of the picture? My son takes advair ongoing (inhaler) and

albuterol for

> reactive airways. He was coughing a croupy type choking cough last

night but

> the broncodilators and promethazine together help.

>

> Cheri

[Guest guest]

They tried albuterol and an inhaler but made no difference.--

- In Mito , Clcr100@a... wrote:

>

> In a message dated 12/27/02 12:13:37 AM, bhoffman58@h... writes:

>

> > sometimes it seems like he is choking

> >on his own phlegm.

>

>

> Have the docs ruled reactive airway related? All of the symptoms

together

> don't sound like a reactive airway type of situation, but perhaps

it could be

> part of the picture? My son takes advair ongoing (inhaler) and

albuterol for

> reactive airways. He was coughing a croupy type choking cough last

night but

> the broncodilators and promethazine together help.

>

> Cheri

[Guest guest]

They tried albuterol and an inhaler but made no difference.--

- In Mito , Clcr100@a... wrote:

>

> In a message dated 12/27/02 12:13:37 AM, bhoffman58@h... writes:

>

> > sometimes it seems like he is choking

> >on his own phlegm.

>

>

> Have the docs ruled reactive airway related? All of the symptoms

together

> don't sound like a reactive airway type of situation, but perhaps

it could be

> part of the picture? My son takes advair ongoing (inhaler) and

albuterol for

> reactive airways. He was coughing a croupy type choking cough last

night but

> the broncodilators and promethazine together help.

>

> Cheri