Bi-lateral vocal cord paralysis

[Heather]

Hi,
My name is Heather, my son Michael was born with bi-lateral vocal cord paralysis we are new here as well. I have been unable to find support or input from other family's that children have been diagnoised with this. My son has not been trached yet. He is maintaining his airway with some struggle and high pitched stridor at times. We have been informed by our ENT that Michael will need a tracheotomy in the future for surgery if not sooner if he is unable to maintain his airway as he grows. Any comments would be greatly
accepted.

Thank You.

[Bj_and_Heathers_mom]

Hi welcome .... everyone here is very friendly...... hope you find the info you are looking for.....my daughter has bi-lateral vocal cord paralysis but is trached..... if I can be of any help please let me know...adinah and again welcome :)

[Hanna]

Hi Heather :star:
My daughter has had a trach for 7 years due to other issues then youre son has but I just wanted to say welcome

[alizesmom]

Welcome. Karen

[Heather]

Many thanks for the welcome.I am still trying to figure out how all this works.
Michael's cords are in an open slit position, how about your daughter's. Was she trached right at birth? How is she doing now? I hope I have not bombarded you with too many questions.

[Isaac'sMomandDad]

Heather,

I had to 'pop' in to say hi when I saw the title of your post. My son is 14 months old, he was trach'd at 11 days old. It was the best thing that could happen for us b/c his cords were almost closed and he was having really bad stridor when he breathed and working really hard. Now he is doing great, making lots of noise, and best news, he will likely have his trach out this summer. I would love to write more but he is having a fit right now.

How old is Michael?

Lara

[Heather]

Lara, Thank you for your response. Michael just turned 6 mo old. He was born on 8-16-2007. Everything I have read about BVC Paralysis has been
very scarry. I am very thankful each and everyday that Michael is where he is and want to find the best treatment. Has Isaac had any surgery on his cords?

Heather

[Kira]

Hi Heather,
Welcome! My daughter has bilateral vocal cord paralysis from the removal of a large tumor in her neck and chest. She was trached about three weeks after the tumor removal when she was 2 years old. When Jaci was four, she had a surgery by Dr. Cotton called a vocal cord laterization to move one of her vocal cords (I'm not too good at explaining this surgery, but Dr. Cotton's airway nurses do a great job explaining it). I would highly recommend Dr. Robin Cotton at Cincinnati Children's Hospital. I can't tell you how grateful I am to have found him. Jaci still has her trach, as she has many other issues from her tumor. Good luck with everything, and I am sorry that you have to go through this.

[Topher's Mom]

Hi Heather. My son is trached for other for another reason so I can't offer you any advice on vocal cord paralysis but as you see there are others who can. I just wanted to say welcome. You will find alot of advice & encouragement on this board.

Karol

[JWorthington]

Hi and welcome!:) There are lots of people on this board with kids with BVCP, so you should find lots of answers here. Hope you can get through without the trach:hug:
Julie

[Isaac'sMomandDad]

Heather,

Okay, now hopefully Isaac is playing with his Daddy so I can get a bit of a break.

We've been lucky overall. Isaac's cords were paralyzed in an almost closed position, so he was trach'd when he was just 11 days old. Before it was like he was breathing through a swizzle stick, he was having high pitched stridor even when sleeping, my poor little man!

We've just been patiently waiting to see if things got better. His condition has always been called idiopathic, he had a full work up at Boston Children's Hospital and besides his cords everything else is fine. He has never had any surgery besides the trach. We just see his ENT every few months and they do a flex scope through his nose when we go. At our last visit, great news, the cords are moving and opening 'enough' that we are going to attempt a decannulation this spring. We will be admitted for a couple of days at Boston Children's for a bronch and trial of capping the trach.

We love our doctor at Boston Children's, but Dr. Cotton is evidently the world expert in childhood airway issues. We have never had to see him, but we were thinking if things didn't get better on their own we would go to see him for a second opinion.

My two cents, for what's is worth, is that bilateral vocal cord paralysis is a pretty rare condition and every child is different. So, 'reading' and 'research' never really helped me too much. What did help is having this great message board for support.

If Michael ends up not needing a trach, great!! If he does, we'll be here to help and support you with that as well. For us it really wasn't a choice, but we are so glad he has his trach. And, it hasn't slowed him down any...

Lara

[Heather]

Lara,

I can relate to the swizzle stick comment as Michael will have stridor at times while sleeping or if he gets to worked up. The more relaxed he is the less you hear.

Michael's doctor said they did not have a reason for his condition as well, after he was born they ran an MRI which came back negative for any abnormalities which are usually associated with his condition and he had a dye barium swallow test to se were his food was going to make sure he could protect his airway. He has so far protected his airway. Michael' last scope was this past wednesday and he said everything looked to be the same as when he was born however as he has gotten bigger so has his airway. It is a wait and see here- no movement means surgery and they will trach him at that point.

Glad to hear Isaac has movement that is wonderful news and hope all goes well with decannulation in the spring. He is a little cutie. Thank you ever so much for talking with me as It was nice to find this message board.

Heather

[Isaac'sMomandDad]

Heather,

sounds like good news from your latest scope, I'll keep my fingers crossed for you....

Lara

[haltec]

Hi Heather. Welcome! I had to chime in. My daughter also has bvcp, but she was not born with it. She was intubated for a short time in August which caused it. She was trached 9-27 at 5 months. She was struggling so hard to breath, that trach was a relief. However, here we are 5 months later and her cords are moving (one 90%, the other just a little). She is making all kinds of noises which I missed so much. However we still have the subglottic stenosis to deal with. We are waiting to see if her airway will grow as she gets bigger before we think of decannulating.
Good luck. Your last scope sounds promising. I'll keep you in my thoughts.

[Heather]

Hi Claudia, Thanks for the welcome! Glad to hear that Sienna has movement has it gives hope to everyone who's child had bvcp. All of these kids here are amazing!! Good luck with her airway I hope as she grows it does it. (you just gotta love all those little baby noises).

Heather

[Mom_to_an_angel]

Welcome to the boeard. My daughter Jordan has bi-lateral parilized vocal cords as well. she was trached at 13days old.We tried to wait as long as possible before putting the trach in. What her issue is when she gets mad, her cords would slam shut and u would hear the strider. Now that has been almost 2 yrs and her cords still dont open all the way when she gets mad. But over in all if u have any questions just message me. we live in iowa.

[Heather]

Hello Vennessa- Thanks for the welcome. Have the doctors talked you at all about any surgery for Jordan? It seems that every child is different in their paralysis from talking with everyone here. Overall Michael is doing very well and I am so proud of him.

Thanks again Heather

[Mom_to_an_angel]

Hey heather, to answer ur question yes we maybe looking at laser surgery on her cords in June. But we have to wait and see in may when she sees her ent.The ent that she sees studied under Dr. Cotton in Cinni. Her name is Deb Goebel in Omaha, Neb. She is really great toward Jordan. If you have any more questions do feel free to message me.

[KaidynsMom]

I am VERY new at this site... so please if anyone can try and help me here, it would be greatly appreciated....

My son was born 16 weeks premature and was in the hospital for 9 months before he came home (after being in 3 different NICU's and 1 PICU). when he was 6 months old he got a nissen and g-tube. At 7 months he got his trach because of bi-lateral vocal cord paralysis, which quite honestly, I don't know very much about. Kaidyn's going to be 2 in April. We just had a follow up appointment with an ENT and they did the scope down his nose and trach and said that both cords were still completely paralyzed and he's going to have to keep his trach most likely forever... This was pretty upsetting because he's had a Passy Mur since november and has been making all sorts of sounds so we were thinking that meant his cords were starting to work. Apparently those were only assumptions. (Like I said I don't know much about this stuff). We just got the internet hooked up at our house so of course I've been all over the place trying to look up information about all this and what we can possibly do to get his vocal cords working so we can work towards decannulization. I heard something about this "Dr. Cotton" in Cinci and I sent him an email but who knows if that's something that would ever happen since we live in upstate New York and I don't know how we would be able to get Kaidyn all the way to Ohio (for more than one reason). I also found something online about this "vocotab" thing (www.vocotab.com) and I've never heard anything about it before... If anyone has, please let me know. Again I am very new at all this stuff and I've never seen so many people that have kids with trachs and you guys all seem to know a lot about this kinda thing :) Any info please send me a message or email me. THANKS!!!

[Heather]

Felicia, Welcome. Sorry to hear of everything that you are going through. I have heard that Dr. Cotton is the best. If you cannot make to see him I would say go for a second opinion. I know that surgery is an option for some children. Hopefully your child is one of them. I have not heard of 'vocotab" tho. Also I think you will get a better response if you start a new thread, I dont' think everyone can see that you are new here. Go to the welcome center and in the upper left had corner click on new thread. Title your case and put this info in that thread. It is like starting a new conversation. It took me a few times to figure this all out but i think you will see a better feedback. Everyone here is so nice and you will get more info that way too.

Best of luck -talk soon.

Heather

[TommysDad]

Hope you saw our other posting else where about this very topic. I'd at least call Dr. Cotton's ENT Dept. & leave a message for one of his nurse practitioners to call you. Ask if they recommend a trach, vocal cord lazer or stabalization, etc. Just because a doctor worked under Dr. Cotton doesn't mean they are Dr. Cotton! And even if you go to Cincinnati and get another top ENT who works with Dr. Cotton, still doesn't mean they have as much experience as Dr. Cotton. IF Dr. Cotton would take your kids case, there's no way I'd turn him down! He's known world wide & is the best in the business! All the other lagistics of going out of state for surgery & follow-up care seem to work themselves out somehow, some way.