Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi all, I was just curious as to how many of you with MITO issues have developed lung problems and how fast does it progress? Missy mom to jeremy 14 today!! MNGIE www.caringbridge.org/co/jeremy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi Missy! When I lived on the east coast I had chronic bronchitis, and serious asthma for over 2 years... within a year of moving to a drier climate though it cleared up.. I now have mild reactive asthma, but I dont even require steroids for it anymore... so mine actually regressed rather than progressed.. why do you ask? Keely > Hi all, I was just curious as to how many of you with MITO issues have > developed lung problems and how fast does it progress? > > Missy mom to jeremy 14 today!! > MNGIE > www.caringbridge.org/co/jeremy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi Missy, We have seen a definite progression with Will and his respiratory problems. When he first started getting sick (at 5 months) the lungs were not an issue, and now they are one of our biggest concerns. Actually to be specific Will's lungs themselves aren't that bad right now, but his airways are getting progressively worse. We went from an almost normal Bronch to Broncheal/tracheal/laryngeal malacia in about a year and a half. Now we have a visibly floppy airway on x-ray, so it's still getting worse. Nobody is quite sure why, we are still being told (although not as frequently) that Will may still grow out of it (he's almost 3), but most of the Drs aren't sure why it would be getting worse either, they say that never happens. Oh Well. We have seen a lot of progression in Will in general over the past 6-9 months, and the respiratory stuff just seems to be following along. Hope that helps some, J PS Happy Birthday !!!! Hope it's a good one! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Missy, My daughter has an unknown restrictive lung disease, as well as silent aspiration. She has always sounded 'wet' in her throat and coughs a lot on her secretions. At first, it was thought all of her problems were due to the aspiration, which she is tube fed for. She has been seeing a pulm for 4 yrs and has diagnosed her with asthma (as well as the restrictive lung issue). Most of her problems come from not breathing deep enough and not being able to completely clear herself of secretions. She has a shallow rib cage with a flare at the bottom. 4 yrs ago, she crashed with aspiration pneumonia and needed the gtube put in. The drs told us her condition was very serious and her lungs were in bad shape. It was not expected she would get much better, that her lungs would continue to decline and fail. Fortunatly, that was all wrong. While she still has significant issues, careful follwow up by her pulm and ENT, her pulmonary function has actually improved. She can cough up her secretions now, and sometimes spit them out, but usually needs suctioning to help. With many med changes and daily chest pt, her asthma is under better control. She also recently got a cough assist, which blow air in and sucks it out. This has made a huge diffrerence in her 'wet' sounding throat and also she is having less coughing and gagging fits. Her lungs still deteriorate pretty quickly with illness and stress and seizures, but with aggressive care, she recovers fairlu quickly. Feel free to ask more ?'s. e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
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