RE: Stridor and Inverting

[Guest guest]

Our pediatrician who is awesome is not mentioning either right now.

will be released tomorrow and I think the steroids he's been getting have

reduced the swelling or inflammation in his throat. He sounds so much

better. If we had to choose, I'm not really sure what we would do in what

order.

Re: Stridor and Inverting

>Date: Mon, Oct 14, 2002, 4:04 PM

>

> They must've mentioned a tracheostomy to you. Did you just outright

> refuse to do it? or did it never get quite that bad? is in the

> hospital right now with and he keeps getting upset and

> desatting and going around in circles with that. Meanwhile, he's

> receiving breathing treatments and they keep talking about the fundo

> and the trach. Don't want either. Just want him to be better.

>

> Bo

>

>

>

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

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

[Guest guest]

Hi , thanks for the post. Was the J tube helpful? did you do

that before the fundo? did he gain weight the same on the J tube?

Thanks,

Bo

> Bo,

> Yes my Mark did end up with a fundoplycation done. He had

several

> aspiration pneumonia's first. He also had a J tube and a G tube for

a while

> then just a G tube. Please keep me

posted.

>

>

>

>

[Guest guest]

Hi , thanks for the post. Was the J tube helpful? did you do

that before the fundo? did he gain weight the same on the J tube?

Thanks,

Bo

> Bo,

> Yes my Mark did end up with a fundoplycation done. He had

several

> aspiration pneumonia's first. He also had a J tube and a G tube for

a while

> then just a G tube. Please keep me

posted.

>

>

>

>

[Guest guest]

Hi , thanks for the post. Was the J tube helpful? did you do

that before the fundo? did he gain weight the same on the J tube?

Thanks,

Bo

> Bo,

> Yes my Mark did end up with a fundoplycation done. He had

several

> aspiration pneumonia's first. He also had a J tube and a G tube for

a while

> then just a G tube. Please keep me

posted.

>

>

>

>

[Guest guest]

,

you worded that so much better then I ever could have

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

,

you worded that so much better then I ever could have

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

,

you worded that so much better then I ever could have

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

[Guest guest]

,

I don't know if he has this condition. He has a minor ASD in his

heart and i would think they might've seen the double arch when they

repaired his esophagus or when they did the ultrasound of his hert.

But maybe not. They did a scope on him yesterday in the morning and

he has inflammation of his vocal chords and throat from reflux and

crying so much. The ENT said there was no malasia. We have not looked

again at the surgery sight for stenosis.

We will ask his cardiologist or pediatrician to look into the double

arch as a possibility.

Thanks,

Bo

> Hello Bo,

>

> Is there any chance the constriction in the throat is related to

an

> aberrant artery or a double aortic arch? This is the condition

that kept

> our daughter's trachea and esophagus constricted. Her condition

was a

> double aortic arch.

>

> The effects of the condition were visible in a barium study that

made the

> esophagus look as if it had a hairpin turn in it. It was also

evidenced by

> the subglottic stenosis visible during bronchoscopy. The double

aortic arch

> wrapped around the esophagus and trachea narrowing and constricting

both of

> them.

>

> In the last 16 years I have only spoken with a handful of CHARGE

parents

> whose child had this particular condition diagnosed, so I don't

know how

> likely it is that actually has it. Of those whose child has

this

> condition or a similar condition, only some of them found their

child

> needed surgery to correct it. For the children that did not

require

> surgery, the condition was manageable as it was.

>

> Because this condition was not diagnosed early, our daughter

experienced a

> lot of difficulty breathing that was worsened by tracheal malacia.

Once

> the double aortic arch was repaired, she was able to have the trach

> removed. Had the condition been identified earlier there is a

chance she

> could have avoided the trach altogether.

>

> Our daughter had an H-type TE fistula. She had a g-tube for 11

years (but

> only really used it for about 8 years) and a trach for 3 years.

Once the

> trach was removed, she did progress with eating skills and could

eat orally

> within a couple of years. We kept the g-tube for safety in case of

> surgeries or illnesses that required medicines.

>

> Best wishes,

>

>

>

>

>

>

[Guest guest]

,

I don't know if he has this condition. He has a minor ASD in his

heart and i would think they might've seen the double arch when they

repaired his esophagus or when they did the ultrasound of his hert.

But maybe not. They did a scope on him yesterday in the morning and

he has inflammation of his vocal chords and throat from reflux and

crying so much. The ENT said there was no malasia. We have not looked

again at the surgery sight for stenosis.

We will ask his cardiologist or pediatrician to look into the double

arch as a possibility.

Thanks,

Bo

> Hello Bo,

>

> Is there any chance the constriction in the throat is related to

an

> aberrant artery or a double aortic arch? This is the condition

that kept

> our daughter's trachea and esophagus constricted. Her condition

was a

> double aortic arch.

>

> The effects of the condition were visible in a barium study that

made the

> esophagus look as if it had a hairpin turn in it. It was also

evidenced by

> the subglottic stenosis visible during bronchoscopy. The double

aortic arch

> wrapped around the esophagus and trachea narrowing and constricting

both of

> them.

>

> In the last 16 years I have only spoken with a handful of CHARGE

parents

> whose child had this particular condition diagnosed, so I don't

know how

> likely it is that actually has it. Of those whose child has

this

> condition or a similar condition, only some of them found their

child

> needed surgery to correct it. For the children that did not

require

> surgery, the condition was manageable as it was.

>

> Because this condition was not diagnosed early, our daughter

experienced a

> lot of difficulty breathing that was worsened by tracheal malacia.

Once

> the double aortic arch was repaired, she was able to have the trach

> removed. Had the condition been identified earlier there is a

chance she

> could have avoided the trach altogether.

>

> Our daughter had an H-type TE fistula. She had a g-tube for 11

years (but

> only really used it for about 8 years) and a trach for 3 years.

Once the

> trach was removed, she did progress with eating skills and could

eat orally

> within a couple of years. We kept the g-tube for safety in case of

> surgeries or illnesses that required medicines.

>

> Best wishes,

>

>

>

>

>

>

[Guest guest]

,

I don't know if he has this condition. He has a minor ASD in his

heart and i would think they might've seen the double arch when they

repaired his esophagus or when they did the ultrasound of his hert.

But maybe not. They did a scope on him yesterday in the morning and

he has inflammation of his vocal chords and throat from reflux and

crying so much. The ENT said there was no malasia. We have not looked

again at the surgery sight for stenosis.

We will ask his cardiologist or pediatrician to look into the double

arch as a possibility.

Thanks,

Bo

> Hello Bo,

>

> Is there any chance the constriction in the throat is related to

an

> aberrant artery or a double aortic arch? This is the condition

that kept

> our daughter's trachea and esophagus constricted. Her condition

was a

> double aortic arch.

>

> The effects of the condition were visible in a barium study that

made the

> esophagus look as if it had a hairpin turn in it. It was also

evidenced by

> the subglottic stenosis visible during bronchoscopy. The double

aortic arch

> wrapped around the esophagus and trachea narrowing and constricting

both of

> them.

>

> In the last 16 years I have only spoken with a handful of CHARGE

parents

> whose child had this particular condition diagnosed, so I don't

know how

> likely it is that actually has it. Of those whose child has

this

> condition or a similar condition, only some of them found their

child

> needed surgery to correct it. For the children that did not

require

> surgery, the condition was manageable as it was.

>

> Because this condition was not diagnosed early, our daughter

experienced a

> lot of difficulty breathing that was worsened by tracheal malacia.

Once

> the double aortic arch was repaired, she was able to have the trach

> removed. Had the condition been identified earlier there is a

chance she

> could have avoided the trach altogether.

>

> Our daughter had an H-type TE fistula. She had a g-tube for 11

years (but

> only really used it for about 8 years) and a trach for 3 years.

Once the

> trach was removed, she did progress with eating skills and could

eat orally

> within a couple of years. We kept the g-tube for safety in case of

> surgeries or illnesses that required medicines.

>

> Best wishes,

>

>

>

>

>

>

[Guest guest]

Hello Bo,

In Kendra's case, the condition was not visible by ECHO. It was diagnosed

through an angiogram. The angiogram was performed because it was suspected

the condition was causing the stenosis. Kendra exhibited inspiratory wheeze

and retractions that seemed like asthma but were really related to the

effects of the double aortic arch.

Very best of luck. We will be hoping to hear of good news and improvement.

Southern California

>,

>

>I don't know if he has this condition. He has a minor ASD in his

>heart and i would think they might've seen the double arch when they

>repaired his esophagus or when they did the ultrasound of his hert.

>But maybe not. They did a scope on him yesterday in the morning and

>he has inflammation of his vocal chords and throat from reflux and

>crying so much. The ENT said there was no malasia. We have not looked

>again at the surgery sight for stenosis.

>

>We will ask his cardiologist or pediatrician to look into the double

>arch as a possibility.

>

>Thanks,

>Bo

>

>

> > Hello Bo,

> >

> > Is there any chance the constriction in the throat is related to

>an

> > aberrant artery or a double aortic arch? This is the condition

>that kept

> > our daughter's trachea and esophagus constricted. Her condition

>was a

> > double aortic arch.

> >

> > The effects of the condition were visible in a barium study that

>made the

> > esophagus look as if it had a hairpin turn in it. It was also

>evidenced by

> > the subglottic stenosis visible during bronchoscopy. The double

>aortic arch

> > wrapped around the esophagus and trachea narrowing and constricting

>both of

> > them.

> >

> > In the last 16 years I have only spoken with a handful of CHARGE

>parents

> > whose child had this particular condition diagnosed, so I don't

>know how

> > likely it is that actually has it. Of those whose child has

>this

> > condition or a similar condition, only some of them found their

>child

> > needed surgery to correct it. For the children that did not

>require

> > surgery, the condition was manageable as it was.

> >

> > Because this condition was not diagnosed early, our daughter

>experienced a

> > lot of difficulty breathing that was worsened by tracheal malacia.

>Once

> > the double aortic arch was repaired, she was able to have the trach

> > removed. Had the condition been identified earlier there is a

>chance she

> > could have avoided the trach altogether.

> >

> > Our daughter had an H-type TE fistula. She had a g-tube for 11

>years (but

> > only really used it for about 8 years) and a trach for 3 years.

>Once the

> > trach was removed, she did progress with eating skills and could

>eat orally

> > within a couple of years. We kept the g-tube for safety in case of

> > surgeries or illnesses that required medicines.

> >

> > Best wishes,

> >

> >

> >

> >

> >

> >

[Guest guest]

Hello Bo,

In Kendra's case, the condition was not visible by ECHO. It was diagnosed

through an angiogram. The angiogram was performed because it was suspected

the condition was causing the stenosis. Kendra exhibited inspiratory wheeze

and retractions that seemed like asthma but were really related to the

effects of the double aortic arch.

Very best of luck. We will be hoping to hear of good news and improvement.

Southern California

>,

>

>I don't know if he has this condition. He has a minor ASD in his

>heart and i would think they might've seen the double arch when they

>repaired his esophagus or when they did the ultrasound of his hert.

>But maybe not. They did a scope on him yesterday in the morning and

>he has inflammation of his vocal chords and throat from reflux and

>crying so much. The ENT said there was no malasia. We have not looked

>again at the surgery sight for stenosis.

>

>We will ask his cardiologist or pediatrician to look into the double

>arch as a possibility.

>

>Thanks,

>Bo

>

>

> > Hello Bo,

> >

> > Is there any chance the constriction in the throat is related to

>an

> > aberrant artery or a double aortic arch? This is the condition

>that kept

> > our daughter's trachea and esophagus constricted. Her condition

>was a

> > double aortic arch.

> >

> > The effects of the condition were visible in a barium study that

>made the

> > esophagus look as if it had a hairpin turn in it. It was also

>evidenced by

> > the subglottic stenosis visible during bronchoscopy. The double

>aortic arch

> > wrapped around the esophagus and trachea narrowing and constricting

>both of

> > them.

> >

> > In the last 16 years I have only spoken with a handful of CHARGE

>parents

> > whose child had this particular condition diagnosed, so I don't

>know how

> > likely it is that actually has it. Of those whose child has

>this

> > condition or a similar condition, only some of them found their

>child

> > needed surgery to correct it. For the children that did not

>require

> > surgery, the condition was manageable as it was.

> >

> > Because this condition was not diagnosed early, our daughter

>experienced a

> > lot of difficulty breathing that was worsened by tracheal malacia.

>Once

> > the double aortic arch was repaired, she was able to have the trach

> > removed. Had the condition been identified earlier there is a

>chance she

> > could have avoided the trach altogether.

> >

> > Our daughter had an H-type TE fistula. She had a g-tube for 11

>years (but

> > only really used it for about 8 years) and a trach for 3 years.

>Once the

> > trach was removed, she did progress with eating skills and could

>eat orally

> > within a couple of years. We kept the g-tube for safety in case of

> > surgeries or illnesses that required medicines.

> >

> > Best wishes,

> >

> >

> >

> >

> >

> >

[Guest guest]

Hello Bo,

In Kendra's case, the condition was not visible by ECHO. It was diagnosed

through an angiogram. The angiogram was performed because it was suspected

the condition was causing the stenosis. Kendra exhibited inspiratory wheeze

and retractions that seemed like asthma but were really related to the

effects of the double aortic arch.

Very best of luck. We will be hoping to hear of good news and improvement.

Southern California

>,

>

>I don't know if he has this condition. He has a minor ASD in his

>heart and i would think they might've seen the double arch when they

>repaired his esophagus or when they did the ultrasound of his hert.

>But maybe not. They did a scope on him yesterday in the morning and

>he has inflammation of his vocal chords and throat from reflux and

>crying so much. The ENT said there was no malasia. We have not looked

>again at the surgery sight for stenosis.

>

>We will ask his cardiologist or pediatrician to look into the double

>arch as a possibility.

>

>Thanks,

>Bo

>

>

> > Hello Bo,

> >

> > Is there any chance the constriction in the throat is related to

>an

> > aberrant artery or a double aortic arch? This is the condition

>that kept

> > our daughter's trachea and esophagus constricted. Her condition

>was a

> > double aortic arch.

> >

> > The effects of the condition were visible in a barium study that

>made the

> > esophagus look as if it had a hairpin turn in it. It was also

>evidenced by

> > the subglottic stenosis visible during bronchoscopy. The double

>aortic arch

> > wrapped around the esophagus and trachea narrowing and constricting

>both of

> > them.

> >

> > In the last 16 years I have only spoken with a handful of CHARGE

>parents

> > whose child had this particular condition diagnosed, so I don't

>know how

> > likely it is that actually has it. Of those whose child has

>this

> > condition or a similar condition, only some of them found their

>child

> > needed surgery to correct it. For the children that did not

>require

> > surgery, the condition was manageable as it was.

> >

> > Because this condition was not diagnosed early, our daughter

>experienced a

> > lot of difficulty breathing that was worsened by tracheal malacia.

>Once

> > the double aortic arch was repaired, she was able to have the trach

> > removed. Had the condition been identified earlier there is a

>chance she

> > could have avoided the trach altogether.

> >

> > Our daughter had an H-type TE fistula. She had a g-tube for 11

>years (but

> > only really used it for about 8 years) and a trach for 3 years.

>Once the

> > trach was removed, she did progress with eating skills and could

>eat orally

> > within a couple of years. We kept the g-tube for safety in case of

> > surgeries or illnesses that required medicines.

> >

> > Best wishes,

> >

> >

> >

> >

> >

> >