I’m Grateful We Were Able to Manage My Son’s Cold From Home

Even the common cold can result in hospitalizations for kids with Pompe disease

Keara Engle avatar

by Keara Engle |

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breathing issues | Pompe Disease News | main graphic for the column

It all starts with the dreaded cough and snotty nose. Next thing you know, you’re rushing your child to the doctor to make sure they’re OK. These days, most parents don’t get too worried about a common cold, unless COVID-19 is a concern. But once that’s ruled out, things tend to be less worrisome.

However, when you have a child with a rare disease, even the common cold can land them in the hospital for weeks at a time.

My 4-year-old son, Cayden, recently got over a cold that we were thankfully able to manage from home. This is a rare occurrence for us. Cayden has infantile-onset Pompe disease, which has greatly affected his lungs and their ability to work correctly while he’s sick.

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He’d tested negative for COVID-19, but I still made sure to get him checked out by the doctor while he was at the children’s hospital receiving his Nexviazyme (avalglucosidase alfa) infusion. She listened to his lungs for a while and told the nurses to thoroughly check his vital signs, including temperature, blood pressure, and oxygen levels.

It was so relieving to hear that everything was fine. Cayden’s lungs sounded clear, and the doctor said all the coughing and raspiness were coming from his upper airway, meaning his common cold hadn’t developed into pneumonia.

We’ve had so many scary incidents in the past that I get extremely paranoid and am on high alert whenever Cayden is sick. Thankfully, we have a pulse oximeter at home that we can use to check his oxygen levels. This brings me some peace of mind.

I also find it helpful to increase his number of breathing treatments until he feels better. When Cayden is healthy, we use his cough assist and suction machine once or twice a day. But when he’s sick, we use them up to four times a day, while also using his inhaler twice a day. This helps to remove mucus and keep his lungs and airway clear.

I know Cayden doesn’t enjoy doing breathing treatments more frequently. He usually fusses and whines, which is hard to watch as a parent. However, I know it’s important for keeping him as healthy as possible, which helps me feel a bit better.

Luckily, he did just fine managing his cold from home this time. But it still wasn’t easy for me to deal with, as I stress and worry about him ending up in the hospital. After everything we’ve been through, it’s a valid concern. It’s hard for me to sleep while he’s sick because I can’t help but think that something horrible will happen if I fall asleep. Thankfully, he sleeps with a BiPAP machine every night, which slightly eases my worries.

This wasn’t the first time Cayden’s gotten sick, and it won’t be the last. However, it’s reassuring he didn’t end up in the hospital. I can only hope that things will stay this way in the future.

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.


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