“I am thankful to serve as a patient advocate for Oliver.”
For a parent, one of the hardest things to listen to is the sound of your child struggling for air. Unfortunately, wheezing is not entirely uncommon in our house. My 5-year-old son, Oliver, has asthma. Despite the fact that his asthma is relatively mild and well-controlled, it still affects our day-to-day lives.
As I think about our journey in managing and living with a child who has asthma, I am thankful to serve as a patient advocate for Oliver. It has and will continue to shape my interactions as a student pharmacist, and I hope our story—through its do’s and don’ts—will help others in the profession to provide better care to patients.
Oliver has never been officially diagnosed with asthma, only reactive airway disorder, which was defined to me as a “benign subset as asthma” by a pediatrician. The idea behind this was to not associate the “stigma” of asthma with an otherwise healthy, very active little boy. Notice all the quotes? I am not sure why everyone feels compelled to tiptoe around asthma.
There had to be an easier way
The lack of an official diagnosis hasn’t been an issue for our family, perhaps because I understand and have accepted that my son has a chronic condition, and that proper care and precautions need to be taken. I also understand the confusion and denial that other parents may experience, which can sometimes lead to a visit to the emergency department.
After Oliver was first diagnosed with reactive airway disorder, we were given a nebulizer for albuterol. No one at the pediatrician’s office or the pharmacy showed us how to use it. We were able to follow the directions and easily figure it out, but the assumption from the physician, nurses, and
pharmacist was that we knew what to do. We didn’t.
It took dragging a nebulizer literally halfway across the country on vacation to get me thinking that there had to be an easier way to make sure our son had access to albuterol. There was. The solution was a chamber (which is different from a spacer) with an inhaler rather than the nebulizer. But, I had to ask for the prescriptions. Again, when I was prescribed a spacer (when we needed a chamber) and face mask, no one explained how to use the
device or the inhaler. Luckily, I had recently completed a simulated patient interview where we trained patients on how to use, clean, and prime various
inhalers.
Not all patients have parents who are trained with inhalers. And I am sure you have heard laughable stories about patient’s misuse of their inhalers.
Help ensure proper usage
Albuterol by itself isn’t enough to manage Oliver’s asthma. When I first brought up the idea of using an inhaled corticosteroid to manage his frequent wheezing and repeated oral steroids, the pediatrician (who was not our regular physician) completely dismissed the idea. His view was that it would stunt Oliver’s growth, weaken his immune system, and that he wouldn’t be able to coordinate his breathing to get the dose. I left that appointment upset, as I knew this wasn’t the recommendation from the guidelines and that his
arguments weren’t evidence-based.
I was able to at least convince that practitioner to revisit the current recommendations so that he could better manage other patients, but we left that appointment with a recommendation to use the albuterol nebulizer more aggressively and to whack my son on the back after a shower. All the while, my son was wheezing nightly and had received multiple prescriptions for oral prednisone, which could actually stunt his growth and weaken his immune system. I knew we weren’t properly managing his asthma.
Luckily, our family pediatrician prescribed an oral corticosteroid in order to help control Oliver’s nightly symptoms. Yet again, no one counseled us on the importance of rinsing out his mouth to avoid oral thrush. The take home message here? As a pharmacist, please don’t make assumptions that parents picking up inhalers, spacers, or nebulizers know how to use them
appropriately.
Our story is still unfolding, but I hope it illustrates the impact that pharmacists can have in helping manage chronic conditions like asthma. My son has relatively well-controlled asthma, but if other parents don’t hear a diagnosis of asthma, and aren’t properly using their asthma medications, the outcomes may be different.
Jenna Reynolds is a final-year PharmD candidate at the Midwestern University College of Pharmacy–Glendale.