Wednesday, May 5, 2010

Symptoms of laryngeal cleft

So what in the world is a laryngeal cleft? I'm glad you asked. There are four classifications of clefts. ENT's use a measuring system to classify the type, such as Benjamin and Inglis's classification scale (see link). My son Henry has a type 1a laryngeal cleft. A laryngeal cleft is a communication between the "tracheal and esphogeal axis.[1]" These two structures are normally completely separate. A cleft allows liquids or food, to enter the lungs rather than passing straight through the stomach via the esophagus. Aspiration occurs when a foreign substance enters the lungs. Since infants or children with clefts are chronically aspirating; they typically present symptoms such as chronic cough, wheezing and recurrent pneumonia. The severity of symptoms may vary between patients. While one child may be in and out of the hospital with pneumonia and recurrent respiratory infections, another child with the same level cleft might only have minor symptoms and be relatively healthy. Many parents report that their child has a "rattle" sound in their throat or that they feel a rattle in their child's chest when they breathe. Unfortunately, these symptoms mimic other common childhood illnesses like reflux, asthma and allergies. This overlap in symptoms often delays diagnosis and many parents become frustrated in the interim.
If your child has some or all of these symptoms it is important to keep a journal of symptoms and when they occur. Consider keeping track of your day and what your child eats and drinks. How does he/she sound before she eats? How does he/she sound after? Does your child tolerate certain foods/drinks and not others? When did the symptoms begin and how long have they been going on? Keep track of phone calls you make to doctors and tests that your child has done. This way you can keep your child's information in one place and have one file to show other health care professionals. Keep in mind that you are your child's advocate. If you feel that a doctor is not listening to you, tell them how you feel, if they still don't listen, change practitioners. Be persistent. If you know that something is "just not right" with your child, keep track of the symptoms and keep the doctor informed of your concerns. Consider finding an expert. For instance, if your son continues to have respiratory problems and the pediatrician doesn't seem to know what to do, do some research and take your son to the best pediatric pulmonologist (lung specialist) in your area.
Some important tests in diagnosing laryngeal cleft might include: Modified Barium Swallow Study to diagnosis dysphagia (difficultly swallowing) and aspiration; Upper GI series to differentiate between reflux and other congenital anomalies such as tracheal esophageal fistula; PH probe to diagnose reflux. The doctors might run other tests such as an MRI to rule out central reasons for aspiration or endoscopy to assess the GI tract and other causes for swallowing problems.
The only definative way to diagnose a cleft is with a bronchoscope. This is a scope of the airway which is done under anesthesia usually by both the pulmonologist and ENT doctor. If your child was just recently diaganosed with a cleft, please see my links list for a support site and more information.


Disclaimer: the above information is based on personal experience and research. If you have concerns about your child's health seek medical advice.

References
1.Laryngeal Cleft
Stéphane M. Pezzettigotta, Nicolas Leboulanger, Gilles Roger, Françoise Denoyelle, Eréa-Noël Garabédian
Otolaryngologic Clinics of North America
October 2008 (Vol. 41, Issue 5, Pages 913-933)"

3 comments:

  1. Hi,

    My name is Mark and our son has Laryngeal cleft type I.

    To obtain more insight in this rare anomaly we realised an online platform for parents by parents with children who have laryngeal cleft, where they can share their stories and exchanges experiences with eachtother.

    I'd like you to join as well and share your story.
    You can register for free via this link: http://laryngeal-cleft-support-group.ning.com

    If you have any questions please feel free to contact me at laryngealcleft@gmail.com

    Have a great day!

    Mark

    ReplyDelete
  2. Mark, thank you for your site, it is great for people to find support, I don't know how I would have gotten through the worst times with Henry if it wasn't for that support of other parents going through the same thing. I will definately look at your site and list it with my resources, thank you for providing that support to others.

    ReplyDelete
  3. Thanks for sharing this extremely informative article on chronic cough. I recently read about chronic cough on website called breathefree.com. I found it extremely helpful.

    ReplyDelete