Pediatric bronchiectasis (new diagnosis)

Posted by beanhead100 @beanhead100, Oct 8 7:30am

Greetings everyone. My 13 year-old has a history of frequent pneumonia’s. Newly diagnosed with bronchiectasis (right loser lung lobe) this week. Most recent pneumonia last month appear to have been successfully treated with Levaquin however he had recurrent shortness of breath with activity prompting them to do a CAT scan and bronchoscopy. He had mucous plugs and a lot of gray mucus in his right lower lobe.They’re having him do three times a day albuterol and 3% saline and a flutter device. His shortness of breath hasn’t improved. They’re waiting to get cultures back from the bronchoscopy. I am absolutely terrified. They also started him on three times a week azithromycin “through the winter months and possibly longer.” He had no other health history except for a few pneumonia‘s five years ago within an 18 month time span that they attributed to a reactive airway even though he never had classic asthma symptoms, and then two recent pneumonia‘s in the last six months. I’m getting the house tested to make sure there’s no mold hiding anywhere in the walls. he’s shortness of breath didn’t improve after the bronchoscopy and lavage. Has anyone just had a consolidated area surgically
Removed and had good results? I don’t understand why his shortness of breath didn’t get better after removal of the mucous plug and other secretions that were trapped in the right lower lobe. I am so so scared, I can’t sleep, any words of encouragement or personal experience that I may draw some strength and hope from would be much much appreciated. God bless you all 💗 (FYI his immune system workup was normal and he tested negative for cystic fibrosis).

Welcome to Mayo Connect – we are community of people with a variety of health issue who support each other in our journeys, seeking medical care & treatments. Your son's diagnosis is probably scary for you, and for him as well.

If there is anything a teenager hates, it is to be different from his peers, and this diagnosis sets him apart. Please reassure him that it is possible to live a normal life with bronchiectasis, as long as he follows a few precautions and treatment recommendations. I am a 69 year old grandma with bronch, my 40 year old daughter, who has a long history of severe asthma, has it as well. We live normal lives, as long as we follow our airway clearance rituals and remain alert for onset of new infections. I have had bronchiectasis for some time, probably also brought on by recurrent pneumonia and it took many months to get both a proper diagnosis and treatment. I have had bouts of MAC and pseudomonas, both brought under control by medication, and now am managing with nebs.

If you read through some of the discussions on this group you will find a wide variety of information about bronchiectasis and the many issues that go with it. Probably the cultures taken were to determine if he has pseudomonas or MAC (mycobacteria aviums complex,) a slow-growing, non-contagious relative of TB. Both are initially treated with medication regimens, usually involving a combination of medications. Surgery is usually considered a last resort, and sometimes repeated lavage may be needed to resolve mucus plugs.

Probably the most important thing you can do for your son is to find a pulmonologist experienced in treating bronchiectasis, if possible in children and young adults, where it seems to be a very rare condition. Do you have access to a Mayo facility or National Jewish Health (NJH) which are among the most advanced in treating bronchiectasis? Otherwise, if you let us know your general area, someone in the group will probably have a recommendation for a pulmonologist nearby.

Sue

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@beanhead I have Bronchiectasis and MAC This can all be alot to deal with at the start, so confusing and scary however as time goes on, with the right meds you will feel more in control again and so will your son. the lack of sleep doesn't help either, just remember to look after your self too so you can look after your son. So hard and emotional when it is your child, I feel for you. Everyone on here is so wonderful, keep in touch. Take care Heather

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