sub glottic stenosis

twoasone1

Does anyone have experience with this?  My DS was just diagnosed with this during his surgery to place his G-tube yesterday.  They said his trachea was the size of a 28 week old fetus.  The specialist is coming again tomorrow to do another scope to figure out the next step.  Just wondering if anyone else has experience with this?

mfisher123

me! My DD has it, we just don't know the "severity" yet. She was going to have her cleft palate repaired a few weeks ago and they noticed it then. We are going to have a bronchoscope done by a pulmonologist and ENT in a few weeks to determine the amount of scar tissue and what to do to correct (laser procedure, probably). They kept us in the hospital that night to monitor her oxygen sats (we don't have a monitor at home) and they were consistently in the 90s so I don't think they are too terribly concerned.

twoasone1

I didn't think I would have any luck finding anyone else who had a little one with this condition. 

My DS was diagnosed with it when he was having surgery to have a g -tube placed because of another condition he has.  They said that his trachea is the size of a 28 week old fetus.  When he was three weeks old they said that he had trachealmalatia.  That was a misdiagnoses. I had been telling them for awhile now that I thought it was getting worse.  Now we know why.  He is going back in in two weeks to have it looked at further and then we will decide what the best option is.  They did decide that it was congenital instead of acquired which is what most cases are I guess.  Has you little girl had any symptoms?  DS sounds like he has croup all of the time.  Good luck with your DD!  I hope it isn't very severe and that they are able to do the laser procedure to correct it.

cabiddle

Check the message boards on tracheostomy.com.  I know a lot of them have dealt with it (although it seems to be acquired) and could probably help you a little more.