Laryngeal Cleft Kids

Parent to Parent support for kids with dysphagia and laryngeal clefts

Latest Activity

Alicia K Nielsen left a comment for Tracey
yesterday
Alicia K Nielsen commented on Jen Vaughan's blog post 'We finally have answers!!'
YaY for answers! My daughter as a type 3 cleft. I would love to know any and all info that you get from your ENT. I don't have many answers. I know what midline disorders should be screened for, but not much about the surgery. Hope things are goin...
on Monday
Tracey left a comment for Alicia K Nielsen
on Monday
Tracey replied to Alicia K Nielsen's discussion 'Ages for repair surgery'
Hi Alicia, Jennifer had her repair done 1 month before her 3rd birthday. She had a type 1 cleft. Her doc said that he doesn't always repair type 1 clefts but with Jen's worsening swallow studies she would likely never be a kid who learned to compe...
on Monday
Alicia K Nielsen added a discussion
Ages for repair surgery
Interested to know how old your child was when the repair surgery was done, also, what level of cleft (1-4) and whether your dr. thinks it will be a single (1 time) repair or more?
on Sunday
Alicia K Nielsen commented on Kristine's blog post 'No Title'
I hope everything is going well!! Will keep good thoughts and fingers crossed for you.
on Sunday
Alicia K Nielsen Looking for support/hope indealing with this crazy disease!
on Sunday
Alicia K Nielsen is now a member of Laryngeal Cleft Kids
Welcome Them!
on Sunday
Kristine left a comment for Tracey
November 7
Tracey left a comment for Kristine
November 5
Tracey left a comment for Jen Vaughan
November 5
Amanda McKnight added 2 photos
November 5
Jen Vaughan added a blog post
Hello everyone. Our son Daniel (3 years old) was finally diagnosed with a laryngeal cleft. After years of searching for the root of his feeding/swallowing/breathing issues, we are finally here! I can't tell you how many doctors we've seen and how ...
November 5
Kristine added a blog post
Hello - I am new to this site and have been having a journey for over a year with my son who was first misdiagnosed that he did not have a cleft at childrens hospital boston (not Dr. Rabhar, but another ENT there) after he was admitted for aspirat...
November 5
Jen Vaughan left a comment for Kristine
October 27
Kristine is now a member of Laryngeal Cleft Kids
Welcome Them!
October 27

Members

  • Tracey
  • Amanda McKnight
  • Alicia K Nielsen
  • jamal m s sousan
  • Andrea Sennott
  • Megan Heim
  • Kristine
  • natalie
  • Jen Vaughan
  • Sharon

A support group made up of parents of babies and children with laryngeal clefts or dysphagia of unknown causes.

Events

 

Forum

Alicia K Nielsen

Ages for repair surgery 1 Reply

Interested to know how old your child was when the repair surgery was done, also, what level of cleft (1-4) and whether your dr. thinks it will be a single (1 time) repair or more?

Started by Alicia K Nielsen. Last reply by Tracey Nov 16.

Tracey

Some things you can do on here

Hello all! I'm glad to see some new members!! Yipee!! 1. Blogs There is a tab called "our blog". It is where you can upload blog posts that are relevant to our board. You can also go to that tab ...

Started by Tracey Oct 6.

natalie

Going to Boston 1 Reply

My daughter's story is so much like Jenny's story it is unreal. We are going to Children's Hospital Boston to see Dr. Rahbar and his team on Oct 26th. 3 weeks and counting and hopefully we will fin...

Started by natalie. Last reply by Tracey Oct 6.

Tracey

Welcome!!

Hello all and welcome to LCK!!! We have moved from the old site and I hope this site will be much better and more used. I hope that all of us can find the time to come on every few days and support...

Tagged: dysphagia, aspiration, cleft, laryngeal

Started by Tracey Sep 25.

Photos

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Blog Posts

Kristine

Hello - I am new to this site and have been having a journey for over a year with my son who was fir…

Hello - I am new to this site and have been having a journey for over a year with my son who was first misdiagnosed that he did not have a cleft at childrens hospital boston (not Dr. Rabhar, but another ENT there) after he was admitted for aspiration, but we have since switched to mass eye and ear and mass general and he is scheduled for a cleft repair in a few weeks. We hope this will be the end of a long journey involving aspiration, thickened liquids, chronic cough and wheezIng. He is now 2 y… Continue

Posted by Kristine on October 27, 2009 at 4:30pm — 1 Comment

Jen Vaughan

We finally have answers!!

Hello everyone. Our son Daniel (3 years old) was finally diagnosed with a laryngeal cleft. After years of searching for the root of his feeding/swallowing/breathing issues, we are finally here! I can't tell you how many doctors we've seen and how many times I've asked them if there could be a structural reason for his issues. We are so happy to finally have the mystery solved!!!

I find it unusual that now 3 members of this blog are in the Chicago suburbs. We even have the same ENT as Megan's so… Continue

Posted by Jen Vaughan on October 23, 2009 at 6:39am — 1 Comment

Tracey

Laryngeal cleft repair and post op visit

This was originally posted on my blog on August 5, 2008. It gets the most visits and comments of any other posts!! The post on the blog has lots of pictures too!

Jennifer had a type 1 laryngeal cleft that was diagnosed in Feb 2008 at Children’s Hospital Boston. This is basically an anatomical abnormality in the larynx that allows food and/or liquids to enter the windpipe when they are swallowed. For Jennifer the pr… Continue

Posted by Tracey on October 8, 2009 at 7:34pm

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