One Breath is All It Takes
Poor Inhaler Technique Could Have Cost Amanda Her Life
Amanda, of Santa Fe, N.M., is an incredibly active 10-year-old. She runs, plays soccer and tennis, plays the trumpet and truly enjoys life. You would never know that she has severe asthma. However, just a few months ago, her disease was so out of control that her entire family lived in fear that a severe asthma attack would take her life.
Amanda’s journey with asthma started when she was 4 years old and living on the East Coast. It took two trips to the ER with labored breathing and blue coloring for her to be diagnosed with severe asthma exacerbated by viruses. That is when she was put under the care of a pediatric pulmonologist and allergist in addition to her pediatrician. They were able to control her condition with an inhaler and occasional steroid treatments.
“Amanda’s asthma was so under control we didn’t even realize how serious asthma could be,” said Rori Grabel, Amanda's mother.
Amanda’s asthma remained stable for several years. In her last year on the East Coast, she started getting viruses more often, each time needing steroids for at least two weeks.
“We were under the care of good doctors, so we were not worried, but we did start to question why she was getting worse,” Rori said. “It was when we moved to New Mexico that very, very quickly things started getting out of control.”
The Grabels attributed the worsening asthma to a Juniper tree allergy, but even under the care of an allergist, they could not keep Amanda well. After she emptied her entire rescue inhaler in one day and still couldn’t catch her breath, her parents rushed her to urgent care.
“Her blood oxygen was so low, the doctors were surprised she was still standing,” Rori said.
The urgent care physicians sent her to a hospital in Santa Fe. When doctors there couldn’t get her breathing under control, she was transferred to an intensive care unit at a larger hospital in Albuquerque. Amanda was suffering from a serious viral infection and a cold.
Doctors weren't sure why Amanda's asthma kept getting worse, despite treating the infection and cold, and increasing her asthma medications.
“Things were massively out of control,” Rori said, recalling attack after attack and frantic calls to 911.
“We were worried every time she stepped on the soccer field that she could fall down and die. I was going to her school daily with nebulizer treatments, and our normally happy child was having panic attacks, crying and saying she was afraid of dying in her sleep. It is hard to comfort somebody when you are that panicked yourself.”
The Grabels were worried Amanda could die, and no one could tell them why. Out of desperation, they asked their family and friends for suggestions. Two different people suggested National Jewish Health, and Amanda’s doctor agreed that should be the next step.
“I called and was told to bring her in as soon as possible. When a last minute opening came up between Thanksgiving and Christmas, we dropped everything and went,” Rori said.
A Comprehensive Approach
Immediately after arriving, the whole family met with Bruce J. Lanser, MD, and Amanda’s care team. Dr. Lanser said it appeared that Amanda was not getting the medicine into her system, but he wanted to find out why and rule out any other complications.
“They explained the tests, the doctors who would be involved, the people we would be meeting and the timing of the process. They addressed everything,” Rori said. “They talked to Amanda and got her involved in the process. They never made her feel excluded.”
After Amanda met with Dr. Lanser, the nurse observed Amanda’s inhaler technique. While she was breathing in six times per puff, as prescribed, she was never really breathing in deeply. The nurse suspected the medication was not making it deep into Amanda’s lungs. She immediately modified Amanda’s technique to one deep breath that she held in for 10 seconds. Throughout Amanda’s time at National Jewish Health, the nurse continued to work with her daily on the proper technique to get the medicine into her lungs.
The medical team also encouraged Amanda to attend pediatric art therapy classes. This National Jewish Health program uses the production of visual art as a form of therapy for children undergoing treatment. There she met another girl her age going through the same thing.
“Art therapists worked with both the girls,” Rori said. “And when Amanda returned, she was excited that she already made a friend.”
Comprehensive testing revealed that Amanda’s breathing capacity dropped to 40 percent in a stimulated attack, and that she did not have any of her three inhaled medications in her blood.
“She might as well have been puffing her inhalers into the air,” Rori said.
By that time, it was clear to Amanda’s medical team that she was not receiving her medicine because of poor technique. They no longer felt more invasive procedures were necessary.
“Dr. Lanser could have just run down a list of tests, but when the solution was clear, he stopped,” Rori said. “We’ve had some very good doctors over the years, but the team at National Jewish Health had a different approach than I’d seen before. They approached everything in a very smart, compassionate, reasonable way. They looked at test results differently than any of our other doctors, and they knew what to do with them. The entire team was very child friendly and clearly talking to each other. They were much more comprehensive.”
An Empowering Change
Three months after leaving National Jewish Health, Amanda uses only one inhaler and has had no asthma attacks. With her disease under control, she has also regained her confidence.
“She no longer thinks she is going to die from her asthma in the middle of the night,” Rori said. “Her panic attacks and night terrors are over.”
Rori believes Dr. Lanser and his team saved Amanda’s life.
“Another mom asked me if I was upset because we abandoned our life to come to National Jewish Health for two weeks for such a simple thing,” Rori said. “That simple thing would have killed my daughter. I’m unbelievably happy it was such a simple thing and easily corrected. I know it wouldn’t have been discovered anywhere else.”
Amanda sees the difference in the approach taken at National Jewish Health as well. She now feels empowered when dealing with her asthma because they included her in the process.
That empowerment has allowed Amanda to not only return to the soccer field, but also train for a 5K with her father.
As many as half of the 25 million Americans with asthma, or about 12 million people, do not have their disease under control. Approximately 20 percent of these patients have the most severe form of the condition. These individuals have the biggest impact on the morbidity and mortality of asthma, as well as a tremendous effect on the economic burden of asthma.
Learn more about how you can support patients at National Jewish Health