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saywhatyouwill
02-18-2010, 02:42 PM
can anyone advise about this? an online friend of mine has been told that her 2 year old has severe laryngomalacia that is causing collapse in her airway every minute or so whilst sleeping. they say she needs to be trached. she has no problems whilst awake.

she isn't happy to just go along with the trach. the doctors have now suggested CPAP.

just wondered if anyone here has knowledge about this.

clare.

Niff
02-19-2010, 08:18 AM
This was Mackenzie's first diagnosis for her airway. She still has it, although it isn't a major issue now since she's trached (for other reasons). But when she was first diagnosed I did a lot of heavy research about it because I felt that it wasn't the only problem going on. Sure enough, it wasn't, but I digress...

There are a few different options: trach, CPAP, or supraglottoplasty.

When she's sick, does she have an issue with it while awake? That would be my main concern for going the CPAP route. The CPAP will help at night, but during the day it will do absolutely nothing if she were to get sick and have difficulty breathing. Plus, how many 2yo do you know that will sleep with a CPAP mask on if they're not used to it since birth?

The supraglottoplasty is a last resort here. Since her child is 2, she would probably tolerate the surgery well. Basically they go in and reconstruct the airway so the child no longer has laryngomalacia. The infant son of an old internet friend that I haven't talked to in ages had this done. 3 of her 4 children had some degree of laryngomalacia and one was severe enough to warrant surgery. It worked beautifully and he hasn't had any problems since. IMO, if they're throwing around the word "severe" then your friend's child is definitely a candidate and I would start discussing this as an option.

From what I remember, laryngomalacia becomes less severe as the child gets older, gains weight, is stronger, etc. I'm wanting to say the magic number that a child SHOULD outgrow it is 2yo, but don't quote me. If it hasn't changed much yet, then I'd probably consider the surgical correction route.

Kate
02-19-2010, 08:42 AM
I'm wanting to say the magic number that a child SHOULD outgrow it is 2yo, but don't quote me. If it hasn't changed much yet, then I'd probably consider the surgical correction route.

Mitchell's LM was the first thing to resolve itself. I don't remember age-but was probably 2 or 3.

I guess for me the questions I'd ask would be....does this child have any problems at all during the day--taking a look at all aspects of her life not just day to day stuff. Like Niff said-illness would be a big one. HOw about when upset, what happens if she gets hurt and cries hard?I didn't do tons of research-mainly because we had more issues than the LM and that resolved itself rather quickly (compared to TM)

At this point I'd be very concerned about nights-what are they doing now? Do they know what she sats at night? Have they done a sleep study.
I'd suggest a 2nd opinion if your friend isn't sure what to do. I'd think they'd want to do something about the night problem though right away as it could be pretty dangerous. Check out a bigger facility-I know our hospital that we went to when Mitchell was little was great-but they just didn't know a lot about all this technical stuff-they themselves didn't know the options because they just didn't do them. (which is why we're now at Mayo)

Good luck.

Wooders80
02-19-2010, 02:15 PM
Don't know a load about it, but I remember I was at a talk once by an ENT surgeon (actually an ACT agm) and I think they said that until recently you would need a trach for laryngomalacia, but it is something that can now be corrected sugically. Just don't ask me how!

saywhatyouwill
02-19-2010, 03:32 PM
thanks for the comments. i remember when they thought emily might have laryngomalacia they mentioned the surgery. and that was only if it was bad. so hopefully this little girl's doctor will get a proper ENT involved and stop talking about trachs until it's clear that one is needed!

LittleBee
02-19-2010, 08:49 PM
Luke still has trouble with this, and when I was thinking it was the last thing keeping him from being decannulated I looked into it quite a bit. Supraglottoplasty is the surgical correction for LM, and from what I found would now be done before a trach - a trach was the only treatment (for severe LM) before the surgery was developed. And if the child is otherwise typical then the surgery has a great success rate (somewhere in the 90th percentile). It is also a pretty quick and simple surgery that doesn't require a long hospital stay. In it the epiglottis is lasered on one or both sides. It is more conservative to do one side, and that is what I was going to request for Luke. The surgeon can always cut away more tissue, but once it is gone, they can't add it back. The biggest complication risk is aspiration. And if the child is already aspirating or has other medical issues then the risk is much greater. We decided not to do this surgery with Luke because of this increased risk. I think the thing that makes the risk greater is the possibility that the malacia is caused by a neurological issue, which would not be corrected by the surgery.

Typically kids outgrow LM by 24 months, but there is still some chance that it will improve after this. Our plan was to keep watching it and waiting until Luke was 5 before we considered the surgery again.