Are airway issues common???

[Guest guest]

My son who is 4 1/2, unspecific Mito disease has airway issues.

At age 6 weeks he was rushed to the P.I.C.U, with severe stridor.

They did a Broc scope and said he has a floppy voice box

(Laryngiamalacia), sent us home on a apnea monitor. They said it

would stiffen up and he would grow out of it in a year. 4 1/2 years

later, he still stridor. Only at night, or in the day hour if he is

really hot. It gets really bad if he gets the slightest cold or even

just a runny nose.

They did another Bronc Scope this summer and said his airway may be

collapsing because of week muscles in the chest.

Has anyone ever heard of this with Mito Disease???

Please let me know if you have!!!

[Guest guest]

I tried to email you earlier but it didn't go thru. Yes!!! My son has suffered laryngospasms and stridor hi entire life. We have almost lost him numerous times. He is 14 years old and has not gotten any better, in fact the weaker he gets the worse he is. His growth is severely stunted so maybe your little one will grow and the airway with it.

Good Luck

mom to Colby, COX IV, LCHAD, Hypothroidism, osteopenia, Possible Prader Willie syndrome, ACC and ADHD

Are airway issues common???

My son who is 4 1/2, unspecific Mito disease has airway issues.At age 6 weeks he was rushed to the P.I.C.U, with severe stridor. They did a Broc scope and said he has a floppy voice box(Laryngiamalacia), sent us home on a apnea monitor. They said it would stiffen up and he would grow out of it in a year. 4 1/2 years later, he still stridor. Only at night, or in the day hour if he is really hot. It gets really bad if he gets the slightest cold or even just a runny nose.They did another Bronc Scope this summer and said his airway may be collapsing because of week muscles in the chest.Has anyone ever heard of this with Mito Disease???Please let me know if you have!!!Please contact mito-owner with any problems or questions.

[Guest guest]

I missed this post originally so I hope this isn't too late to help. My son

is 28 months old and suspected to have Mito. One of the problems that he

has is airway problems. For him they didn't start until he was 6 months

old, but they are getting progressively worse. He has been diagnosed with

Asthma/Reactive Airway disease and Broncho/Trachealmalacia. He also has a

floppy larynx and epiglottis. He had has 3 Bronchs, each one looks worse

than the last. We had been told by one DR that there was no way things

could be getting worse until she took another look. Now we just have to

wait to see if it improves, or gets worse to the point of needing a trach.

Will's is worse when sleeping and when he's sick, but cold temps can also

set him off. He also struggles with aspiration so that always makes it

worse.