Re: Re: choanal atresia response and question?

[Guest guest]

we also had the mytomyicin applied a couple times!

[Guest guest]

Hi

I hope you have better luck than we have had. We are on her 4th surgeon.

Mays first surgery was when she was 9 days old, unfortunatley the dr had never

done the procedure before.

May had surgery in Aug they went through her nose and removed a piece of the

septum in the back to make one big opening, they brushed the mitomisin back

there. Unfortunatly a boney mass has grown back and closed her passages again.

We will see her 2 surgeons on Monday they are going to team up, we will speak

of what procedure they are going to try, I hope to go there w/ good

suggestion on what i have heard to work.

Cris

[Guest guest]

Our daughter had mitomycin application when she had repair at 7

weeks old. She subsequently needed laser surgery one week after the stents

came out to widen the airways a little more and then some scar tissue

removal last year (only because she was on GA for another procedure). At

3-1/2, she has not needed any further repairs 9fingers crossed0. Don't know

whether it was the mitomycin or just good luck or good surgeon or all 3 but

she has not needed restenting since the 7 weeks old surgery.

Flo

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: choanal atresia response and question?

>Date: Thu, 08 Jan 2004 21:36:50 -0000

>

>Hi Cris: Im facing the problem right now, is now 3 months old

>and tomorrow we will remove the stents from her nose, I know that

>they will put a medicine called " mitomicina " (spanish word) and we

>will see how she faces this, We are really scared because it seems

>that the repairs always tend to close again, have they tryied this

>medicine on your child?

>

>

>

>

>

>

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[Guest guest]

,

We did the mitomycin on my daughter but it didn't have the success we'd

hoped for, hope it works for your !

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: choanal atresia response and question?

Hi Cris: Im facing the problem right now, is now 3 months old

and tomorrow we will remove the stents from her nose, I know that

they will put a medicine called " mitomicina " (spanish word) and we

will see how she faces this, We are really scared because it seems

that the repairs always tend to close again, have they tryied this

medicine on your child?

> Hello everyone, i was wondering if anyone would be able to help us

> May has had 6 chanal atresia repairs and none have worked so far

has

> anyone had success and w/ what type of procedure? needs a

> pheringal flap any info on that would be greatly appriciated.

> Thanks, Cris

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