Re: RAD - Reactice Airway Disease

[Guest guest]

oh NO not another saga for you LOL its good to make light of the sagas

sometimes hehehe i donno bout this one but good luck

>

> Hi everyone, what are some symptoms of reactive airway disease. I

> think Alissa's got it but I'm not sure. Is it a typical charge

> characteristic? IF there is anyone out there who's got it how are you

> treating it? Which medications? Puffers etc...

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

My daughter has RAD. She has had it since birth. She often sounds

wheezy, coughs a lot. Her attacks are characterized by increased

secretions at night, nose secretions and lots and lots of a hacking

cough. She is five now and the doctor is calling it asthma for the

first time. Her seems to be brought on by environmental changes.

Spring and fall are terrible for her, we have attacks for a month in

both seasons. We can predict rainy weather by an attack a few days

ahead. She is treated with Singulair and flovent daily and Albuterol

o r Xoponex treatments during her bad times. This spring we are

supposed to put her on nasonex to see if that helps.

When she was younger she was trached (2.5 years) and on a vent for 5

months. She would desat a lot with her episodes. Usually for no

reason. Now her sats usually stay up through the attacks.

Let me know if you have more questions. Hope this helps.

, mom to Makenna 5

>

> Hi everyone, what are some symptoms of reactive airway disease. I

> think Alissa's got it but I'm not sure. Is it a typical charge

> characteristic? IF there is anyone out there who's got it how are

you

> treating it? Which medications? Puffers etc...

>

[Guest guest]

my daughter has severe RAD. It can also be called asthema. she sees a

pulmonologist and has been allergy tested. she takes albuterol prn, flovent 2x

day, singular and rynatan. spring and fall are her worst and often has to go

on predisone liquid. we do lots of CPT and last year her pulmonlogist got

our insurance to approve the respiratory vest. she wears this a minimum of

2/day for 20mns, it really has made a differnce. when erika gets a cold or

allergies are acting up, she gets worse, quickly. so i see the signs now and

immediately, give her nebulizer treatments and lots of CPT and the vest.

my suggestion is to see a pulmonologist.

it got little better when her trach came came out 2 years ago.

cathie, mom to erika 10 yrd.

[Guest guest]

This sounds like Amelie!

She has had a nasty cough since birth, worse at night heavy

secretions and a slight weezing, also worse at night and lots of de-

sats, she has just been given Salbutamol through a chamber for

Asthma,to help with the weezing, but her lungs are a mess from

aspiration!

love Lesleyx

> >

> > Hi everyone, what are some symptoms of reactive airway disease.

I

> > think Alissa's got it but I'm not sure. Is it a typical charge

> > characteristic? IF there is anyone out there who's got it how

are

> you

> > treating it? Which medications? Puffers etc...

> >

>

[Guest guest]

,

What symptoms does Alissa have? How long has she had them?

As you begin to oral feed with her, be very sure you have the respiratory

symptoms under control first.

You can have the respiratory problems all by them self, but they can also be

directly caused by silent reflux, which is followed by silent aspiration of

small amounts - so even when tube fed, aspiration can happen or in kids who

are fed orally, they can aspirate small amounts every now and then, so they

seem to be doing great, but small amounts of milk get into the lungs, which

leads to the RAD symptoms.

I agree with the recommendation to see a pulmonologist.

Kim

On 2/23/06 11:41 PM, " matthew_steven_alissa "

wrote:

> Hi everyone, what are some symptoms of reactive airway disease. I

> think Alissa's got it but I'm not sure. Is it a typical charge

> characteristic? IF there is anyone out there who's got it how are you

> treating it? Which medications? Puffers etc...

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

,

What symptoms does Alissa have? How long has she had them?

As you begin to oral feed with her, be very sure you have the respiratory

symptoms under control first.

You can have the respiratory problems all by them self, but they can also be

directly caused by silent reflux, which is followed by silent aspiration of

small amounts - so even when tube fed, aspiration can happen or in kids who

are fed orally, they can aspirate small amounts every now and then, so they

seem to be doing great, but small amounts of milk get into the lungs, which

leads to the RAD symptoms.

I agree with the recommendation to see a pulmonologist.

Kim

On 2/23/06 11:41 PM, " matthew_steven_alissa "

wrote:

> Hi everyone, what are some symptoms of reactive airway disease. I

> think Alissa's got it but I'm not sure. Is it a typical charge

> characteristic? IF there is anyone out there who's got it how are you

> treating it? Which medications? Puffers etc...

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

,

What symptoms does Alissa have? How long has she had them?

As you begin to oral feed with her, be very sure you have the respiratory

symptoms under control first.

You can have the respiratory problems all by them self, but they can also be

directly caused by silent reflux, which is followed by silent aspiration of

small amounts - so even when tube fed, aspiration can happen or in kids who

are fed orally, they can aspirate small amounts every now and then, so they

seem to be doing great, but small amounts of milk get into the lungs, which

leads to the RAD symptoms.

I agree with the recommendation to see a pulmonologist.

Kim

On 2/23/06 11:41 PM, " matthew_steven_alissa "

wrote:

> Hi everyone, what are some symptoms of reactive airway disease. I

> think Alissa's got it but I'm not sure. Is it a typical charge

> characteristic? IF there is anyone out there who's got it how are you

> treating it? Which medications? Puffers etc...

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

and an ent is good to

>

> ,

>

> What symptoms does Alissa have? How long has she had them?

> As you begin to oral feed with her, be very sure you have the respiratory

> symptoms under control first.

>

> You can have the respiratory problems all by them self, but they can also

> be

> directly caused by silent reflux, which is followed by silent aspiration

> of

> small amounts - so even when tube fed, aspiration can happen or in kids

> who

> are fed orally, they can aspirate small amounts every now and then, so

> they

> seem to be doing great, but small amounts of milk get into the lungs,

> which

> leads to the RAD symptoms.

>

> I agree with the recommendation to see a pulmonologist.

>

> Kim

>

>

>

>

> On 2/23/06 11:41 PM, " matthew_steven_alissa "

> wrote:

>

> > Hi everyone, what are some symptoms of reactive airway disease. I

> > think Alissa's got it but I'm not sure. Is it a typical charge

> > characteristic? IF there is anyone out there who's got it how are you

> > treating it? Which medications? Puffers etc...

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support groups does not constitute membership

> in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

and an ent is good to

>

> ,

>

> What symptoms does Alissa have? How long has she had them?

> As you begin to oral feed with her, be very sure you have the respiratory

> symptoms under control first.

>

> You can have the respiratory problems all by them self, but they can also

> be

> directly caused by silent reflux, which is followed by silent aspiration

> of

> small amounts - so even when tube fed, aspiration can happen or in kids

> who

> are fed orally, they can aspirate small amounts every now and then, so

> they

> seem to be doing great, but small amounts of milk get into the lungs,

> which

> leads to the RAD symptoms.

>

> I agree with the recommendation to see a pulmonologist.

>

> Kim

>

>

>

>

> On 2/23/06 11:41 PM, " matthew_steven_alissa "

> wrote:

>

> > Hi everyone, what are some symptoms of reactive airway disease. I

> > think Alissa's got it but I'm not sure. Is it a typical charge

> > characteristic? IF there is anyone out there who's got it how are you

> > treating it? Which medications? Puffers etc...

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support groups does not constitute membership

> in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

and an ent is good to

>

> ,

>

> What symptoms does Alissa have? How long has she had them?

> As you begin to oral feed with her, be very sure you have the respiratory

> symptoms under control first.

>

> You can have the respiratory problems all by them self, but they can also

> be

> directly caused by silent reflux, which is followed by silent aspiration

> of

> small amounts - so even when tube fed, aspiration can happen or in kids

> who

> are fed orally, they can aspirate small amounts every now and then, so

> they

> seem to be doing great, but small amounts of milk get into the lungs,

> which

> leads to the RAD symptoms.

>

> I agree with the recommendation to see a pulmonologist.

>

> Kim

>

>

>

>

> On 2/23/06 11:41 PM, " matthew_steven_alissa "

> wrote:

>

> > Hi everyone, what are some symptoms of reactive airway disease. I

> > think Alissa's got it but I'm not sure. Is it a typical charge

> > characteristic? IF there is anyone out there who's got it how are you

> > treating it? Which medications? Puffers etc...

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support groups does not constitute membership

> in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >