airway issues

[Guest guest]

Dear Group,

I am so thankful for being a member of this wonderful family. Although I

haven't posted a question in about 6 or 7 months, I've read all the topics, and

have learned so much from them.

My daughter, Charlotte, is a 3 year-old cHARGEr, with many issues, all of

which she seems to deal with better than I do on most days. She has had a

trach since 3 months of age, and we are at our wits end in finding a doctor who

is not afraid to take the next step in decannulating her. We live in

southeast Georgia, close to the ville, Florida area.

Charlotte was trached due to severe tracheo/laryngal (sp?) malacia. We were

told she would hopefully outgrow this at around age 3. After numerous

bronchoscopies, it was revealed that she has a condition known as redundant

tissue

growth in the upper airway - supraglottic area. At her ENT visit last week,

the doctor decided that it was too much of a risk to operate on removing

even part of this tissue, because he felt she would scar up and as a result be

worse off than before. This doctor has adopted a wait and see attitude -

along with slight attitudes toward my husband and me.

While up in the NY area this past summer, we contacted her former ENT for a

second opinion. The NY doctor thought it was probably worth the risk and to

go for a partial removal of this tissue.

Since we are facing a very scary procedure, one with questionable outcomes,

we decided to find yet another ENT surgeon to get a tie-breaking answer.

This third ENT had never encountered a problem like Charlotte's.

I'm guessing my next appointment is with Dr. Cotton in Cinncinati. His name

comes up again and again with airway reconstructions.

My question to you, my CHARGE family: Has anyone experienced redundant

tissue growth in the upper airway? Any surgical intervention? We are

desperate

to get this trach out, as this seems to be the only thing standing in our way

for decannulating. Waiting and seeing, possibly for years, cannot be the

only approach, nor does risking the surgery with questionable outcomes.

I'm sorry this was so long. Thanks so much for any advice

Trish C.

Mom to Connor (almost 15), Charlotte (3- CHARGE), wife to (16 yrs)

[Guest guest]

Trish, Dr. Cotton would be the one.

He was not able to decannulate my daughter's trach, however he did some

surgery (her 5th coanal atresia repair, transpalatal) and referrred us to a

Doctor in New York. As it turned out, wea re from New York, so it worked for

us!

Her trach did finally come out at 8 years old. We had about given up hope -

BUT you can never give up hope, some kids take longer than others.

Do not give up

Cathie, mom to 11 yr CHARGEr

[Guest guest]

Cathie,

Thank you so much for your reply. I've read quite a bit about Dr. Cotton

and his success with different types of surgeries.

We are former Long Islanders, and in fact, our medical insurance is still

based in NY. If you feel comfortable sharing the name of the doctor you were

referred to in NY, that would be even better for us, insurance wise.

Yes, I have to remind myself to not give up on hope. All kids are different

and there's nothing text-book about our kids!!

Thanks again!

Trish C.

Mom to Connor (14), Charlotte (2 1/2- CHARGE), wife to (16 yrs)

[Guest guest]

Trish,

I've heard nothing but good about Dr. Cotton. I have no experience in the

area so I'm not much help but I'm wishing you well in your quest for the big

" D " .

www.chargesyndrome.info

>

> Dear Group,

>

> I am so thankful for being a member of this wonderful family. Although I

> haven't posted a question in about 6 or 7 months, I've read all the

> topics, and

> have learned so much from them.

>

> My daughter, Charlotte, is a 3 year-old cHARGEr, with many issues, all of

> which she seems to deal with better than I do on most days. She has had a

> trach since 3 months of age, and we are at our wits end in finding a

> doctor who

> is not afraid to take the next step in decannulating her. We live in

> southeast Georgia, close to the ville, Florida area.

>

> Charlotte was trached due to severe tracheo/laryngal (sp?) malacia. We

> were

> told she would hopefully outgrow this at around age 3. After numerous

> bronchoscopies, it was revealed that she has a condition known as

> redundant tissue

> growth in the upper airway - supraglottic area. At her ENT visit last

> week,

> the doctor decided that it was too much of a risk to operate on removing

> even part of this tissue, because he felt she would scar up and as a

> result be

> worse off than before. This doctor has adopted a wait and see attitude -

> along with slight attitudes toward my husband and me.

>

> While up in the NY area this past summer, we contacted her former ENT for

> a

> second opinion. The NY doctor thought it was probably worth the risk and

> to

> go for a partial removal of this tissue.

>

> Since we are facing a very scary procedure, one with questionable

> outcomes,

> we decided to find yet another ENT surgeon to get a tie-breaking answer.

> This third ENT had never encountered a problem like Charlotte's.

>

> I'm guessing my next appointment is with Dr. Cotton in Cinncinati. His

> name

> comes up again and again with airway reconstructions.

>

> My question to you, my CHARGE family: Has anyone experienced redundant

> tissue growth in the upper airway? Any surgical intervention? We are

> desperate

> to get this trach out, as this seems to be the only thing standing in our

> way

> for decannulating. Waiting and seeing, possibly for years, cannot be the

> only approach, nor does risking the surgery with questionable outcomes.

>

> I'm sorry this was so long. Thanks so much for any advice

>

> Trish C.

> Mom to Connor (almost 15), Charlotte (3- CHARGE), wife to (16 yrs)

>

>

[Guest guest]

Hi Trish,

We were referred to the Cranial Facial Team at NYU. was evaluated to

possible have a jaw distraction done. Dr. Cotton felt the only way to get

her trach out was to do this. After meeting w/that team, they felt a jaw

distraction may not be an answer. On the team was an ENT, Dr. Bernstein. We

immediately, felt he was willing to go the extra mile and work with us. We had

been at Columbia for several years and the ENT their tried 2x to decannulate

and after the 2nd attempt had little hope.

NYU, Dr. Bernstein, felt that needed time, time to learn how to

neurologically control her tongue and swallow more efficiently. We then

started

capping her more and more.

We went into the hospital, he let me decannualte , we gave her O2, and

my husband and i sat with her for 5 hours in her bed, she eventually relaxed ,

her breathing slowed down and we went home the next day!

She stayed on O2 for a couple more days, we weaned her off. There were

several times i thought we may need to put it back in, but we worked through

it.

We live on Long Island!

Feel free to email me privately, i will give you my phone # if you want to

talk more.

Carthie, Mom to

[Guest guest]

Hi Cathie,

First off: Happy Birthday!!

Thanks so much for the name of the NYU doctor who got to the point of

decannulation. Actually, it sounds like it was you who got her to that

point. Never giving up.

Next time we are up in the area, we will contact that NYU team and get the

ball rolling.

Hope you have a great day, and I'm keeping my fingers crossed for good

results from 's school today!

I really appreciate your help.

Trish C.

Mom to Connor (almost 15), Charlotte (3 -CHARGE), wife to (16 yrs)

[Guest guest]

Trish, thanks

let me know if you need #'s etc.

Cathie