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Child w/Tracheobronchomalacia awaiting results of 4th CF test

H

HuntersmomTBM

New member
Hello All,
I am in need of advise. My son, Hunter is 13 his full diagnosed is Tracheobronchomalacia (TBM) and Innominate Artery Compression (IAC), Reflux and Reactive Airway Disease. TBM=softened and misshaped airway. IAC=an artery from his heart compresses his trachea. He has had 1RSV, 7Pneumonias, 6Bronchitis' and 15Croups -plus coutless other URIs that weren't given a name. He was first tested for CF in 2005, he was borderline at 40. His ex-pulmonary dr did nothing. When he closed his local office he sent all the paperwork to his dr. He was re-tested -sweat and blood test -both were negative. Now we are awaiting results for the genetic test. They are looking for Poly-T Variant. He is currently on Flovent daily, stool softner daily, acid reflux meds daily, Atrovent PRN, Xopenex to follow PRN and steriod pills at sign of first illness. Of course I am worried. I have most of his medical records and PFTs at the house. Is there anything I should look for?
Colleen
mother to Dominick (15), Hunter (13 TBM & IAC) and Jennifer (12)
 
H

HuntersmomTBM

New member
Hello All,
I am in need of advise. My son, Hunter is 13 his full diagnosed is Tracheobronchomalacia (TBM) and Innominate Artery Compression (IAC), Reflux and Reactive Airway Disease. TBM=softened and misshaped airway. IAC=an artery from his heart compresses his trachea. He has had 1RSV, 7Pneumonias, 6Bronchitis' and 15Croups -plus coutless other URIs that weren't given a name. He was first tested for CF in 2005, he was borderline at 40. His ex-pulmonary dr did nothing. When he closed his local office he sent all the paperwork to his dr. He was re-tested -sweat and blood test -both were negative. Now we are awaiting results for the genetic test. They are looking for Poly-T Variant. He is currently on Flovent daily, stool softner daily, acid reflux meds daily, Atrovent PRN, Xopenex to follow PRN and steriod pills at sign of first illness. Of course I am worried. I have most of his medical records and PFTs at the house. Is there anything I should look for?
Colleen
mother to Dominick (15), Hunter (13 TBM & IAC) and Jennifer (12)
 
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