Home
Log in / Sign Up
    Private Messages   Advanced Search   Rules   New User Guide   FAQ   Advertise   Contact Us  
Forum -> Children's Health
Laryngeal cleft type 1



Post new topic   Reply to topic View latest: 24h 48h 72h

amother
Pink


 

Post Tue, Jan 29 2019, 6:48 am
My daughter has been having trouble swallowing so she had an MLB which showed a laryngeal cleft type 1. The doctors are saying that it is an accidental finding and should not be the cause of a swallow disorder.

2 questions:

1.Has anyone ever has this with their child?
Further on in life is there anything that shows up due to the cleft (swallow problems, voice...)

2.My other concern is that I read somewhere that females could something wrong with their womb- is this still a concern even with a type 1? what can I do when she is older to make sure her womb is ok? is it necessary to check her womb?

She is perfect otherwise, developmentally and mentally.
Back to top

happyone




 
 
    
 

Post Tue, Jan 29 2019, 7:06 am
if she is having trouble swallowing, I would get a second opinion on the cleft. its easily repaired and can be contributing to her swallow dysfunction. type 1 is generally the mildest form. if she is aspirating, I would pursue it. I never hear of type one being indicitive of other issues.
Back to top

amother
Pink


 

Post Tue, Jan 29 2019, 12:21 pm
Her consultant has agreed to do a repair but still says its highly unlikely to help. I am thinking of trying a tonsillectomy first as she has grade 4 tonsils- consultant feels that it won't help but is happy to do it first.
Back to top

amother
Black


 

Post Fri, Feb 01 2019, 7:37 am
Has she had an instrumental swallowing test (Modified Barium Swallow study)? This will need to be done with a speech pathologist, usually in an outpatient hospital setting. It is basically like a video X-ray of what happens while your daughter is swallowing different consistencies of food and liquid. It will be very helpful.
Back to top

anonymrs




 
 
    
 

Post Fri, Feb 01 2019, 11:29 am
I know someone who had her kid's repaired even though it was an accidental finding.

What kind of professional is a consultant?
Back to top

amother
Salmon


 

Post Fri, Feb 01 2019, 1:15 pm
It's very hard to comment without full info, my first inclination is always to basically trust the treating doctor, but it does seem suspect that an unusual "incidental" structural finding was found when investigating a related functional condition.

While it's possible that the cleft does not 'directly' contribute to the swallowing difficulty, could it be possible that it represents an overall issue laryngeally, in the sense of a muscular/structural system that is somewhat compromised, both organically and functionally, the cleft being a physical manifestation of an organic weakness/incoordination in this anatomical system.

I'm an slp, but not particularly experienced in this area. I personally would seek further advice and information.
Back to top

amother
Salmon


 

Post Fri, Feb 01 2019, 1:17 pm
Sorry double post
Back to top

amother
Pink


 

Post Sun, Feb 03 2019, 6:48 am
She has had 3 VFSS (swallow studies) she was initially on stage 2 thickened and has recently changed SLT and the new one was so understanding to how difficult it is for a mainstream child to feel so different so scheduled another VFSS and we brought along every type of bottle, staw, cup.... and managed to reduced her thickener to stage 1 but only from a specific straw bottle (non-spill) we are definitely moving in a good direction but I am just wondering about later in life if anyone has ever had trouble.
Back to top

amother
Hyssop


 

Post Sat, Dec 03 2022, 9:55 pm
Did her laryngeal cleft end up needing intervention?
Last week my baby's ENT discovered a layrngeal cleft when doing an endoscopy, I'm trying to get an appt for a swallow study but the hospital said they are not accepting new because the speech pathologist doesn't have space, I'm trying to find a different hospital to bring her to. She doesn't seem to have difficulty swallowing at this point (she's 11 months) but when she was younger she nursed for an extremely long time each feeding, idk if it's related. She doesn't seem to cough or choke on her food but she breathes loudly after she eats, the Dr said she doesn't know if it's related to her cleft or to tracheomalasia. She said there is an easier way to repair the cleft with an injection that causes the area to expand temporarily.
Did your daughter need intervention? How is she doing now?
Back to top

mir1




 
 
    
 

Post Sat, Dec 03 2022, 10:36 pm
My daughter has a laryngeal cleft type 1.
She is also special needs and is delayed physically as well as mentally.
She has a lot of issues swallowing since she is a baby and has had a few choking incidents.
According to her Dr, (a professor that has been studying laryngeal cleft for a while) ppl having a type 1 laryngeal cleft can live their whole life without knowing about it. Meaning the general rule is that it doesn't affect the person so much. Statistacly it is still questionable if surgery would really help.
The swallowing issues in our case can be caused by the cleft but are most likely caused by a neurological problem.
He is not pushing surgery. As long as we manage with thickener and there is no pneumonia he is OK with it.
We revisit the question every 6 months.
Back to top
Page 1 of 1 Recent Topics




Post new topic   Reply to topic    Forum -> Children's Health

Related Topics Replies Last Post
Please help me dress for my new body type
by amother
10 Yesterday at 5:33 pm View last post
What type of school is Oros? 5 Tue, Mar 26 2024, 12:15 am View last post
Sukka - rigid wall type 0 Mon, Mar 18 2024, 9:41 am View last post
Weather in Phoenix_what type of shabbos clothing
by LULA
1 Thu, Mar 14 2024, 9:51 am View last post
by LULA
What type of mishloach manos would YOU prefer to get
by amother
36 Tue, Mar 12 2024, 8:48 am View last post