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My son is 19. He was born with Tracheobronchomalacia so we blamed every respiratory illness on his misshaped and floppy airway. He had 2 Sweat Tests over the years, both borderline results. At age 14 after his 7th pneumonia his pulmonary specialist did a genetics test for CF. No mutations were...

Hello Suren, (I tried this earlier but it didn't post) My son is almost 19 he was diagnosed with CRMS - Cystic Fibrosis Related Metabolic Syndrome at 14 because his genetic test found 7T/7T. Hunter was born with Tracheobronchomalaica (a floppy airway) so everyone thought his respiratory issues...

ellie2153, Hi this is an old thread. I just saw you had Tracheomalacia and Failure to Thrive as a child. My 16 year old son has Tracheobronchomalacia, Innominate Artery Compression and Mild Variant CF. I would love to hear from you. Did you get tested for CF? What were the results. There is a dr...

My 16 year old son has Tracheobronchomalacia (mis-shaped and softened airway), Innominate Artery Compression (an artery near the heart goes the wrong direction and compresses' his trachea 10-15%). He has had 1RSV, 7pneumonias, 6bronchtis, 15croups and I don't even know how many URIs too many...

2 Sweat Test 40 My son was diagnosed at age 14, after his 7th pneumonia, after 4 CF tests with Mild CF Variant after 2 Sweat Test -both 40 (borderline), blood test negative, Genetics Test only found Poly T Variant 7t/7T -so no known genetic mutations. My son also has Tracheobronchomalacia (a...

Lucy13, My son is almost 16 he has CF Variant (dx at 14), Tracheobronchomalacia (floppy airway) w/Innominate Artery Compression. He just came out of the hospital -he was dx with major depression disorder. It was awful. He too refused med, but he did his vest because he can feel the difference...

I just sent a friend request to you Elizabeth and to Delilah Smith Duluth. Some good can come from bad :) Anyone else nice wish to join us. I am on CF Momma's it is wonderful, highly recommend it.

Elizabeth, I read your posts. You mention that your son has Asthma and had little to no help after Xopenex. Tracheomalacia r Tracheobronchomalacia has been found to be mis-diagnosed as Asthma. Albuterol and Xopenex has more bronchodilators (aka muscle relaxers) in them. Both can make some...

Elizabeth, First, I am so sorry that anyone here would talk to you in that matter. It's digusting! Second, my son has had a flexible and a rigid bronchoscope. He also has Tracheobronchomalacia (floppy airway) along with Innominate Artery Compression (an artery grew wrong direction and...

Beccamom, No he has never been tested for PCD, I have heard of it before. With Tracheobronchomalacia sedation can be risky so they tend to do less sedation tests. Colleen

Jshet, Hunter had Failure to Thrive as a child. But is doing ok on weight recently. We add extra calories all the time such as Peanut Butter Milkshakes and Chips. He also has trouble growing taller. He has never had big growth spurts like most young boys/teenagers have. He is about to be 16...

Bill, Hunter is being seen at Children's National Medical Center in DC. It is a an Accredited CF Clinic. He is seen by Dr Hollis Chaney she is amazing. He did not have the newborn screen since it was not available when he was born in 1998. He had an Ambry CF Full Panel done in 2013. Jset...

My 15 year old son was diagnosed with CRMS last year. He also has Tracheobronchomalacia (floppy airway) with Innominate Artery Compression (an artery near his heart compress' his trachea a bit). He has had 1RSV, 7pneumonia's, 6bronchitis', 15croups and countless URIs. He can get pneumonia...

Yes, my 15 year old son was diagnosed with CRMS last year. He also has Tracheobronchomalacia (floppy airway) with Innominate Artery Compression (an artery near his heart compress' his trachea a bit). He has had 1RSV, 7pneumonia's, 6bronchitis', 15croups and countless URIs. His first Sweat Test...

How did your doctor tell you have have a mild case of CF without Sweat Test, Blood Test or Genetic Test? ~~~ Both my son's Sweat Test was 40. His blood test was negative. His genetic test was negative for mutations but positive for 7T/7T poly T variant. He has a diagnose of CRMS -Cystic Fibrosis...

My 14 year old son was recently diagnosed with CRMS both his sweat tests were 40. CRMS=Cystic Fibrosis Related Metabolic Syndrome. I would follow-up with dr. Colleen mother to Hunter Tracheobronchomalacia, Innominate Artery Compression, CRMS 1RSV, 7Pneumonia's, 6Bronchitis' and 15Croups

I joined this site because my 14 yr old son was tested 4 times for CF. He does not have CF. But he has a rare breathing disorder called Tracheobronchomalacia with Innominate Artery Compression. Because of it he gets a lot of URIs -1RSV, 7Pneumonias, 6Bronchitis and 15Croups to date. He uses...

Still waiting for genetic testing results

Still waiting for genetic testing results

Bill, Question? Does your gut tell you Hunter has CF?? I value your honesty thanks