paralysed vocal chords

indiemum · #1 10-17-2002, 12:02 AM

I am new at this so forgive me. My baby was born with bvcp eidology unknown. Indira has been making noise like crazy and her cry has increased about 2x. The other day the trach popped out and she just lay there chewing her fingers not even aware. I just wonder if this is a growth issue or if she is healing. Can anyone lend any support, we are not wanting to get our hopes up but also can't igore the "signs". We were told by ent Indira would recover and the day beore discharge from Hosp. Neurology told us that Indie would never reover. AHHHHHHH! Thanks for any advice or info

p's mom · #2 10-17-2002, 07:13 AM

my son who is now 2 was born with vocal cord paralysis. Â*IT's been a tough but very, very informative road with the this diagnosis. Â*I think it has the doc's somewhat puzzled. Â*

Parker has always vocalized well... due to the positioning of his cords we were told. Â*His are in a paramedian position and through many scopes we also found out that he can close his cords sometimes and this helps with aspiration and coughing and just learning how to swallow and vocalize.

We were told in our case with the paralysis being unknown that Â*if the cords were going to start working they would with in 3 months of age (that's when parker was trached). Â*They usually (dr. Cotton , Cincinnati) give the kids a year and then will look at surgical intervention. We just took Parker to see Dr. Cotton about a month ago and he is scheduled for a lateralization procedure next thursday.

Parker has always been a trach puller.....yes scared us to death several times. Â*

Â* That is when we started to notice that he could tolerate the trach out and started asking the doc's about it. Â*What we found out in Parker's case is that Â*he could tolerate the trach out but over time would become exhausted from inproper air exchange from the paralysis and that's when he'd run into trouble. Â* We recently tried plugging him when we visited Dr. Cotton to find out he did well still /sleeping but when he got up and moved around it was just too tough for him. Â*HE was retracting and breathing very noisly.

Sorry for the novel....LOL....if you have any other questions please feel free to write me. Â*I'd love to chat. Â*This has been a very interesting travel for us but it's been good. Â*WE've learned so much and i'm thankful for the diagnosis being what it is...while we've waited for healing we've been able to enjoy his vocalizing and now he wears the Passy Muir valve all day so the trach stuff is very minimal. Â*Now we've all decided it's time for surgical intervention so he can have the trach out.

Parker's story is on Aaron's page 8Â*if you'd like to read about him.

Cory

indiemum · #3 10-17-2002, 09:48 AM

Thank-you for the response Cory. Indie's chords are in the closed position or so we have been told. I have heard of kids finally having surgery at 6 and 7 yrs of age but my husband and I are united in the sense that we will push for surgery by age 2. I find it interesting to hear all of the different doc's prognosis. Our docs in Vancouver Canada told us that recovery of chords can take months to a year. There is so much uncertainty in the medical profession about this disorder. I read Parker's story and he is lovely, (I read it months ago). I will cross my fingers and toes for you for a wonderful outcome. We have a scope on Friday the 18th so i'll let you know.

p's mom · #4 10-17-2002, 12:22 PM

I also wanted to make sure you saw this report that was just done early this year by Dr. Cotton and some other fellow's.

http://www.tracheostomy.com/resources/vcp.htm

This is a very interesting site and helped us alot with our thought process and decisions for Parke's future.

Cory

indiemum · #5 10-17-2002, 12:48 PM

Great article Cory, it is so difficult to find info on BVCP so that was wonderful. I find in Canada although the doc't are wonderful there seems to be a protocol that they all follow so it seems that "progressive" treatment is sort of behind the States. I have learned so much from reading the message board and also from Aaron's site. Thanks for all of your help. We have no regrets about Indira's life and condition but it is also nice to speak to other mum's, these little people are so special and our 14lb daughter has taught us more about strength and survial than any other person we know.

Kelly

indiemum · #6 10-19-2002, 08:35 PM

Thanks Teresa that was helpful. Indira had her broncoscopy yesterday and there had been no improvement in the chords, however the right sided tongue paralysis seems to have resolved, so you never know. It is so nice to know your little man is doing so well, I don't care if Indie never recovers on her own but I would like a resolution before she is four. I'm glad to know your surgery was a success that gives me hope.

Kelly