Hi, first time on here. We have been struggling with my daughters symptoms for at least 11 months. It started when she was born to full term and a couple days later I noticed she had a funny noise when she was breathing- like a little pug. The dr said it was because she was a big baby and nothing to worry about. Shortly after that, she started having these breathing episodes that came out of nowhere- sometimes congestion a and others with no congestion but struggling to breathe. There have been times where she has become unresponsive or turned blue around her lips, other times she becomes lifeless, sometimes fevers, but she always looks or seems sick, there have been times where her 02 dips to 82-84. For months Drs would say it was RSV, brochiolitis, uri but she would never get better. She has been admitted countless times and she gets more and more steroids there. We switched hospitals and we started seeing a lot of different specialists : ENT,ID,pulm,cardio and nuero, she has had ct, bronchoscopy, MRI on brain , EEG,ekg, sleep study and labs drawn. Her blood came back with deficiencies IGG 2 and 4, and Anemia ( but iron level is normal) every other test has come back normal except for her ct with a collapsed mucous plug in right lung. She is on daily: Flovent (spacer) Atrovent/albuterol (duoneb).emergency- oral prednisone. Her episodes of breathing occur every 2-4 weeks and this has actually been the longest thus far (5 weeks) in between those episodes she is never 100%, last week she had Bronchitis. The Drs thought there was an underlying issue along with asthma, but the only test that came back with evidence was ct.
There are only two symptoms that remain the same every time: she does not sleep the night before and her breathing. Every other symptom changes every time.
I'm just at a loss for words with how I feel, my heart breaks for her. I started a page for her in hopes that another family has been through this and can offer us guidance. I feel like she's on so much medication and more than not she looks awful( extremely pale with dark undereye bags) . Is this what extreme asthma is like? Are their other issues that go along with asthma ( autoimmune diseases?)
I just don't feel 100% sold that all this is from asthma. What else can we do? why does she keep getting these episodes when she is on all these preventative meds?