As you can probably already tell, I am very hesitant to rely on medications. I was always extreme in that regard, but after watching what it did to our son… I’m a little overboard! It feels like God was blessing us for our faithfulness with the diagnosis of bronchomalacia, since you can treat without prescriptions!
From my understanding, a malacia is a floppiness in the airway the will result in a “happy wheezer.” He will wheeze as the air is attempting to pass, but will not cause issues unless mucus builds up around it. Once given a bronchodilator (Albuterol, Xopenex, Atrovent), the airway will pop open and give a false illusion that the patient was having an asthma attack. However, because it is smooth muscle, it becomes so weak once the medication wears off that it will flop closed causing distress.
Our daily prevention plan includes the high-frequency chest wall oscillation (an inflatable vest that is attached to a machine that mechanically performs chest physical therapy by vibrating- I wish I could add a link for you, but you don’t want to know the price. If you have insurance, please fight for one.) and the Flutter (provides positive expiratory pressure [PEP] therapy). The vest vibrates the chest to loosen and thin mucus, while the Flutter opens the airway to allow movement of that mucus.
When he gets a minor cold, we bump up treatments to avoid infections or the need for emergency bronchodilators. We use Acapella (more intense PEP device- I’ll add link below) and Aerobika (our favorite PEP that is attached to a nebulizer with medical grade saline solution to loosen up the mucus). We alternate between the Sinugator (our favorite nasal wash that uses premixed packets of USP grade sodium chloride and sodium bicarbonate and distilled water to quickly clear the sinus passage- also below) and Alkolol (mucus solvent consisting of essential oils and herbal extracts- added below, but not our favorite). We also focus on lots of extra rest, extra water, less dairy, humidifier, Vicks on his feet, and OnGuard essential oils.
We had a scare in December (a little after his one year anniversary) and when we called pulmonologist, he suggested Atrovent. I understand where he was coming from as if the airway needs to be opened, we must open it at all costs. However, I knew that once we opened it using a bronchodilator, that we’d be sucked back into the vortex of medications as it would weaken his malacia. We did everything in our power to help him clear and he did. The light at the end of that tunnel was the next day delivery of the vest, emphasizing to the doctor that the vest will be cheaper than another hospital admittance! 😉
On the occasion that he is hospitalized, I insist on high-flow oxygen and airway clearance only.
I also want to emphasize the importance of avoiding steroids, especially oral. While they are amazing and help tremendously, they suppress immunity. Therefore, the more you have, the less your body naturally produces. End result: more frequent infections.
While there may not be studies supporting this, I also believe the body becomes addicted to these medications. We’ve been attempting to ween our son from inhaled steroids since last March (almost a year). Every time we take a day off (regardless of how slow we weened), he has terrible coughing fits all day. Some may say this means he needs this medication; however, it never actually prevented those terrible coughing attacks he had time after time. When given blood tests to determine his inflammation markers, not ONE of them ever proved that he needed inhaled steroids.
Best wishes with your fight! Do not give up! We need to trust doctors and obey their suggestions, but also need to listen to our God-given instinct if you believe something is wrong. Just find a new doctor (even if you have to go through 18) that will listen to you and come up with a compromise.
acapella DH (Green) Vibratory PEP Device w/ Mouthpiece, 1 Each
NeilMed Sinugator Cordless Pulsating Nasal Wash with 30 Premixed Packets
Alkalol Solution Original Nasal Wash, 3 Count -16 fl oz
Vicks VapoRub Ointment, 1.76 Ounces
