Our Experience With a Holter Monitor

Last week, we took my 4-year-old son, Cayden, to the cardiologist, one of the many specialists who help manage Cayden’s complex medical needs. He has been visiting the cardiologist since he was diagnosed with infantile-onset Pompe disease at just 1 month old.

When Cayden was diagnosed, he was already experiencing moderate to severe heart failure. Pompe caused him to develop hypertrophic cardiomyopathy, which is when the heart thickens and enlarges, making it hard to pump blood. With the help of enzyme replacement infusions, his heart returned to normal size and function by the time he was 4 months.

Despite the significant improvements in Cayden’s heart, he still experiences tachycardia, or a high heart rate. The normal heart rate for a child his age is anywhere from 80-120 beats per minute (BPM). Cayden’s resting heart rate, on the other hand, is typically 130-140 BPM, and even higher when he is exercising or sick.

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Because his heart rate is consistently high, Cayden’s cardiologist decided to place a 24-hour Holter monitor on him at his most recent appointment. This portable device monitors a patient’s heart rate for an extended period of time. We haven’t used this before, but I have faith that his doctor knows what she’s doing.

In the past, a Holter monitor was equipped with multiple electrodes connected to a bulky recording device. But technology has advanced, and the Holter monitor has as well. The device that we were sent home with was very low-profile. It was one sticker, about the size of an adult’s palm, that was equipped with a small chip that recorded his cardiac activity. Cayden barely even noticed that the Holter monitor was on for most of the 24 hours.

I’m interested to see the results of the Holter monitor test, which we should have in two to three weeks. However, I fear that we may have to repeat the test because Cayden was dealing with pneumonia at the same time, which caused his typical high heart rate to be even higher. (He handled this recent case of pneumonia extraordinarily well compared with the last time he had it. Cayden only spent two days in the hospital this time, whereas last time he had to be intubated and hospitalized for two months.)

No matter what the test results are, I am certain they will be beneficial one way or another. He could just have a heart that beats abnormally fast, or there could be an issue that we haven’t caught yet. Whatever the case, I am thankful that Cayden’s cardiologist is taking this extra step to ensure he stays healthy.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.