https://www.hindawi.com/journals/criot/2013/649203/
https://www.ncbi.nlm.nih.gov/pubmed/26917656
https://www.healthcentral.com/article/asthma-misdiagnosis-why-its-so-common
Besides our son, I’ve been able to identify bronchomalacia and tracheomalacia in two other children that were all being incorrectly diagnosed and treated. Not because of coincidence, but most likely that God had a purpose for some crazy lady to bring more awareness to this very common, yet slightly unknown issue!
From my understanding (please note before reading- I’m not a doctor, just a mom that cried through many sleepless nights, worried about my child), a malacia is floppiness of the airway, whereas asthma is tightening. So, it’s important to be able to distinguish, as most doctors jump straight to asthma and attempt to treat with medications. They use medications that are meant to loosen the airway. Just visualize being weak. … and then taking a muscle relaxer! Results worsen each dose and can be disastrous, if not weened ASAP!
Alright, here are some questions I ask suspected “participants” that will give me the time! 😉
1. Do they appear content? Malacia patients are known as “happy wheezers” and can be in distress, yet smiling, playing, eating, drinking, and sleeping somewhat well. Except, during coughing fits when they think they are choking. 🙁
2. Does their wheeze sound like a crackle or squeak? Malacias cause issues when mucus becomes stuck under them. So rather than the sounding like air trying to escape/ squeak through tightened airway, it sounds like air creeping through secretions.Doctors and nurses have mentioned that our sons wheeze is inspiratory.
3. Does their cough sound dry or like they are choking on yogurt (sorry, cleanest example I could think of)!? When an asthmatic is coughing, I’ve been told it sounds dry as their bodies are trying to force air out. Malacias cause that thick sound as they are coughing to loosen secretions. They will also vomit those secretions after a good coughing fit. CPT (chest physiotherapy)/ airway clearance are BEST methods to help. If you dont have equipment, you can watch youtube for strategies to do with your hand. For 8 days straight, I would just panic and pound on his back. Once he would vomit, he was back to normal and ready to play! We also use the high frequency chest oscillating vest and PEP (positive expiratory pressure) devices (Aerobika) to open airway. I’m also looking more into mucus thinners (guaifenesin and saline nebulizers) and mucus reducers (zarbees) as they seem to be helpful. High Flow oxygen helped pop it open during our most recent hospital stay.
4. Have doctors ever looked for one? Many kids (including ours) have had broncoscopies, only to be told they are normal. A malacia is usually only detected if they are looking for it, as the camera pops open that floppy area and goes unnoticed. I also believe that if the child still has steroids in their system, the malacia won’t look as intense.
5. Do steam, cold air, and changing positions help? Haven’t thought thru or researched that one, but those help malacias. Warm honey lemon water and popsicles help, as well. At times, you can move around your child and open up a malacia on your own. Sleeping upright helps our son.
6. Do corticosteroids prevent and bronchodilators treat an attack? They haven’t helped our son and have even appeared to worsen the situation.
7. Does their oxygen remain stable? For whatever reason, it doesnt seem affected by malacia related respiratory distress.
8. Do steroids help? Well, I’m starting to think steroids help everything! 😉 These most recent trips, they didnt save the day like the “good ol’ days” his lungs were collapsing from bronchodilators, but I do wonder if they helped any irritation from coughing so much. Sadly, they should only receive them twice a year…. and we capped out at 9! We also have a friend experiencing withdrawal because the gave them 31 times in 31 months for his misdiagnosis of croup!
9. What works best in the hospital? From our experience, once they find a successful airway clearance technique, results are immediate. Luckily for us, he keeps us on our toes looking for the next best thing! 😉 Deep Suction (into the lungs, not just throat) has cleared him, along with Cough Assist, and ICU strength High-Flow Oxygen. We did overcome quite a few from home, using the vest, Aerobika, and saline nebulizer. Also, good ol’ fashion back beating! 😉 Before, they knew what it was, it took longer. Like the time they thought it was Pertussis, they just did antibiotics and he cleared in 6 torturous days. Another time, they stopped all meds and he had the worst 3 hour coughing fit I’d ever witnessed. And, if you listen to the video of our “normal” for 12 days in December of ’15, that’s a big deal. The other times were about 3 days recovery on oral steroids and weening albuterol.
10. Does your child get frequent infections? The secretions get trapped under malacia, and can cause infections such as pneumonia and bronchitis. Our son had haemopholis, even though he was vaccinated against it.
*** What is God trying to whisper to you? I do believe He told me early on, I just need to learn how to correct doctors without sounding like a jerk! 😉