Re: Re: Obstructive apnea and Swallowing problems

[Guest guest]

Eneida,

You are in a great city for Children's medical care! And there are

wonderful members of this list who live in or near Boston, so I'm sure

there will be good suggestions for doctors.

With the aorta wrapping around the esophagus, I don't know how common it is

in CHARGE, but it does happen. I have only heard of a few cases besides my

daughter, and in some of the other cases, surgery was not necessary to fix

it. It is one reason for a narrowing in the trachea, though. I think it

may be present in more children but not necessarily cause problems.

I'm wondering if Liam has problems eating or not. Does he eat by mouth and

eat well, or does he have a gastrostomy tube?

Glad you found and joined the list!

At 07:56 PM 8/17/2004, you wrote:

>Dear friends,

>

>I am very touched, so many people wrote back about their experiences

>and with suggestions. I definetely learn some new things here. for

>instance I had never heard of the aorta wrapping around the trachea

>and esophagus before. Is this common in CHARGE ?

>

>I will try to address some of the questions that came out:

>

>- kind of info I am looking for? I want to find out as much as I can

>about CHARGE kids' throats. I want to be aware of all known possible

>diagnosis. Liam goes under anesthesia in October I would like the

>ENT doc to find a lead.

>

>- we live in the Boston area. We do see an experienced ENT at

>Children's. I will try to contact this doctor in Ohio. And I would

>still appreciate info on CHARGE docs.

>

>Thanks guys, (I am hooked to this now)

>

>All the best,

>Eneida

>

>

>

>

>

>

>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>http://www.chargesyndrome.org

>7th International

>CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

>Information will be available at our website

>www.chargesyndrome.org or by calling 1-. In Canada, you may

>contact CHARGE Syndrome Canada at 1- (families), visit

>www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

:

Just curious: Kendra had subglottic stenosis, right? And was trached for

that? So much like ! My questions are these:

1) How was the aorta wrap found?

2) Did it effect Kendra's eating/swallowing?

3) Before the aorta problem was corrected, did Kendra ever push on her

throat (particularly the trach site) like she was trying to clear it?

will still push on her trach scar sometimes while eating. It is

almost like the swallowing is easier if she does that. I'm wondering if

that could be an indicator of needing to check that out. has apnea

and uses a CPAP now - some obstructive, but mostly central apnea. More

importantly, she also has episodes of severe coughing - red in the face,

eyes bugging out, gagging, etc. - but never gets any mucous production, and

albuterol/nebulizer treatments don't make any difference. When you

mentioned treating this like asthma, it struck a note with me. That is

exactly what we are doing. Her albuterol is prescribed PRN for " coughing

episodes " . With allergies running high this summer, staff at both camps she

attended said didn't have a single nebulizer treatment. I was

certainly surprised as I was having a terrible time with allergies. Now I'm

thinking these are maybe not allergy/asthma triggered. Also thinking about

and joint pain/swelling; I wonder if she could have any swelling

around her airway or aorta causing the episodes to trigger. The ENT has

said on subsequent checks when has been in for other things that her

airways look good. The choanal atresia repair is still good, and he doesn't

see any scarring around the trach site that should cause problems.

On another note, went to the Deaf School on Sunday - check in and

moveing in at the dorm. She was so thrilled to be back at school! They

started classes Monday. She only has 4 students in her class - the other

two 4th grade classes have 6-8 in them. I think that is because they

realize she needs a little more direct instruction. She was so happy to see

that her teacher is one who did her extended school year tutoring for two

summers. I'm sure we're in for a great year; and I'm sure I'll hear all

about every waking moment of this first week when she comes home on Friday!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (15 yrs., ADD) and (12yrs., CHARGE+)

Wife of Rick

oganm@...

oganr@...

Re: Re: Obstructive apnea and Swallowing problems

Eneida,

You are in a great city for Children's medical care! And there are

wonderful members of this list who live in or near Boston, so I'm sure

there will be good suggestions for doctors.

With the aorta wrapping around the esophagus, I don't know how common it

is

in CHARGE, but it does happen. I have only heard of a few cases besides

my

daughter, and in some of the other cases, surgery was not necessary to fix

it. It is one reason for a narrowing in the trachea, though. I think it

may be present in more children but not necessarily cause problems.

I'm wondering if Liam has problems eating or not. Does he eat by mouth

and

eat well, or does he have a gastrostomy tube?

[Guest guest]

Enieda,

Who do you see at Boston Children's? Many of the parents from my school

(Perkins School for the Blind) go through Coordinated Care at Childrens and see

the docs there. Perhaps some will chime in here with their docs and who they

think are good and who have the experience you are looking for. Between

Children's and Franciscan you should come across some of the best!!

(Nedda Hobbs, Lin--actually, she is Cardiology at MGH, Jane

O'Brien--Franciscan's).

Good luck and let us know how it all goes.

Pam

[Guest guest]

I can only repeat what Pam wrote. Nedda Hobbs was easily accessible by

phone, though we never saw her --- but the phone contact was important

and most unusual these days.She had us see someone else - who was

great, but his name escapes me right now. At any rate, I wouldn't hesitate

to follow her suggestions. I think most highly of Jane O'Brien. She is

excellent in linking parents to other specialists and remaining involved.

She has NOT been good at sending reports on to Perkins, as I

recall, but a parent can always reach her or her nurse practioner. Martha

[Guest guest]

Marilyn,

Interesting!!! Kendra's double aortic arch, which wrapped around the

trachea and esophagus, was discovered by a pediatric cardiologist who was

trying to figure out why Kendra could not be decannulated. He speculated

there was a reason she couldn't breathe without the trach and then was able

to diagnose the double aortic arch after doing an angiogram. By the time

we found him and he identified the problem, Kendra had had no less that 12

bronchoscopies and direct visualizations of the airway by well-respected

ENT doctors! We spit a few nails. :-( The effects of the double aortic

arch also could be seen as a 'hair pin' turn in her esophagus during a

barium swallow.

Kendra did well after the double aortic arch repair and was decannulated a

year later. She has no asthma, but does still have some night time

breathing problems - apnea. It is tremendously improved though.

Kendra did not push on her trachea before the repair, but she did have a

trach until the repair. We know a young lady at Kendra's school who

appears to me to have CHARGE. She has an obvious trach scar. She

frequently pushes on her trach scar in order to breathe better.

I'd be really interested to know more about 's subglottic

stenosis. Did she have laryngomalacia?

I hope 's first week at school is fabulous!!!! Does she e-mail you

or call on the tty?

:-)

At 08:30 PM 8/17/2004, you wrote:

>:

>Just curious: Kendra had subglottic stenosis, right? And was trached for

>that? So much like ! My questions are these:

>1) How was the aorta wrap found?

>2) Did it effect Kendra's eating/swallowing?

>3) Before the aorta problem was corrected, did Kendra ever push on her

>throat (particularly the trach site) like she was trying to clear it?

>

> will still push on her trach scar sometimes while eating. It is

>almost like the swallowing is easier if she does that. I'm wondering if

>that could be an indicator of needing to check that out. has apnea

>and uses a CPAP now - some obstructive, but mostly central apnea. More

>importantly, she also has episodes of severe coughing - red in the face,

>eyes bugging out, gagging, etc. - but never gets any mucous production, and

>albuterol/nebulizer treatments don't make any difference. When you

>mentioned treating this like asthma, it struck a note with me. That is

>exactly what we are doing. Her albuterol is prescribed PRN for " coughing

>episodes " . With allergies running high this summer, staff at both camps she

>attended said didn't have a single nebulizer treatment. I was

>certainly surprised as I was having a terrible time with allergies. Now I'm

>thinking these are maybe not allergy/asthma triggered. Also thinking about

> and joint pain/swelling; I wonder if she could have any swelling

>around her airway or aorta causing the episodes to trigger. The ENT has

>said on subsequent checks when has been in for other things that her

>airways look good. The choanal atresia repair is still good, and he doesn't

>see any scarring around the trach site that should cause problems.

>

>

>On another note, went to the Deaf School on Sunday - check in and

>moveing in at the dorm. She was so thrilled to be back at school! They

>started classes Monday. She only has 4 students in her class - the other

>two 4th grade classes have 6-8 in them. I think that is because they

>realize she needs a little more direct instruction. She was so happy to see

>that her teacher is one who did her extended school year tutoring for two

>summers. I'm sure we're in for a great year; and I'm sure I'll hear all

>about every waking moment of this first week when she comes home on Friday!

>

>Friends in CHARGE,

>Marilyn Ogan

>Mom of Ken (15 yrs., ADD) and (12yrs., CHARGE+)

>Wife of Rick

>oganm@...

>oganr@...

>

> Re: Re: Obstructive apnea and Swallowing problems

>

>

> Eneida,

>

> You are in a great city for Children's medical care! And there are

> wonderful members of this list who live in or near Boston, so I'm sure

> there will be good suggestions for doctors.

>

> With the aorta wrapping around the esophagus, I don't know how common it

>is

> in CHARGE, but it does happen. I have only heard of a few cases besides

>my

> daughter, and in some of the other cases, surgery was not necessary to fix

> it. It is one reason for a narrowing in the trachea, though. I think it

> may be present in more children but not necessarily cause problems.

>

> I'm wondering if Liam has problems eating or not. Does he eat by mouth

>and

> eat well, or does he have a gastrostomy tube?

>

>

>