Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 We should be making a appointment with Joey's pulo. doctor. At age 6 week old we was dx. with Laryngiamalacia, floppy airway. They said he would outgrow it at age 18 months. He just turned 5 years old and still struggles with stridor, seems to get worse every year. Summe His stridor gets much worse at night. Which causes his to wake up several times at night. They have done several sleep studies. His oxygen does drop, when he gets fast asleep. Yet he wakes himself up from his stridor.We have tried to get a pulse ox. for a couple nights at home, yet insurance will not pay for it. I'm very interested in what it would be at home. Where it is not 60' in the room and he feels more comfortable. Which I am very thankful he is stong enough to wake himself up. I have looked at " Ask the Doctor " , and I cannot find out much information on airway issue and Mito. I really need to have some proof that it is from his Mito. Our Pulo dr. knows nothing about Mito, and has never seen a child with Mito. Is there a web sight that I can get on that might help with out upcoming appointment? I would like to go in there armed, like I know what I am talking about. Any help would be great!!!! Quote Link to comment Share on other sites More sharing options...
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