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I found your blog via Cystic fibrosis Fatboy. I have a son who is 13, and has a rare, genetic condition called Ataxia-Telangiectasia. (www.atcp.org) It's a neurodegenerative condition, and the most common explanation of what it's like is having ALS, CF, and AIDS all wrapped up in one precious human boy. Anyway, his immune deficiencies are a lack of IgA, and IgE. He has frequent pneumonias, pulmonary infections and the most thick, tenacious mucous I've ever encountered. We have a Hill-Rom vest, and he's on multiple nebs, including Tobi and now hypersal. His pulmonologist is having us try hypersal because the insurance company won't approve Pulmozyme twice a day, which is what he's prefer. I'm trying to explore this, and learn more about CF at the same time. Any advice about how to make things better (like what is the best, fastest neb machine? the one we have is awful) would be deeply appreciated. Now I'm going to start reading - thanks,
P.S. I was told when he was diagnosed at about 3 yrs of age that he would be in a wheelchair by the age of 10 (which happened) and he would probably die in his teens. I'm fighting that second prediction with everything I've got!!! Peace.....