School starts with a fever for my son with infantile-onset Pompe disease

A columnist's 5-year-old faces a health setback just a week into preschool

Keara Engle avatar

by Keara Engle |

Share this article:

Share article via email
main graphic for the column

My 5-year-old son, Cayden, was really looking forward to starting preschool at the end of February. But after only a week of school, he became sick.

While this didn’t really come as a surprise, it was a bit disappointing. I know that colds and the flu can spread like wildfire when a bunch of children are gathered in a small setting, so it was bound to happen. But I didn’t expect it to happen so quickly.

Over the weekend after his first week of school, Cayden, who has infantile-onset Pompe disease, developed a fever and a mild cough. I had to take him to the hospital because of the fever. Cayden has a port that was surgically implanted in his chest, which he uses to get his biweekly enzyme replacement infusions, a common treatment strategy for Pompe disease. Anytime someone with a port gets a fever, they are advised to go to the hospital so that blood cultures can be done on the port to make sure there isn’t an active infection.

At the hospital, Cayden was also tested for different viruses with a nasal swab. Because of his cough and a mild spot of pneumonia on his chest X-ray, doctors wanted to see if a virus was causing his symptoms — and sure enough, it was. Cayden was positive for a parainfluenza virus. He was admitted to the hospital for two nights because we had difficulty controlling his fever, even with medication.

Recommended Reading
The human brain is surrounded by blood vessels in this close-up illustration.

Change in Brain Structure Found on MRI Scans in 1 Pompe Type

Then it hit me

The next day, I woke up feeling like I was knocking on death’s door. I had a fever and body aches, and the lymph nodes in my neck were swollen, causing an immense amount of pain. I wasn’t allowed in the hospital to visit Cayden because of my fever. Thankfully, my grandparents stayed with him, and my grandma even spent the night with him. Family is so important in times like this, and I’m so glad I am able to depend on mine.

I was so relieved to be able to bring Cayden home the next day. I wasn’t feeling 100% better, but I was glad to have him home. It’s a terrible feeling to have your child in the hospital when you’re unable to be there by their side. Cayden kept video calling me saying, “I want my mama,” which broke my heart. I hope we never run into this situation again, because I was just as upset as he was.

Cayden is now on the mend and has returned to school. I hope that it’ll be a while before he gets sick again, although I’m not sure if that’ll be the case. I was wary about sending him to preschool for this reason. However, I know he needs the education and social interaction before he starts kindergarten in the fall. There are pros and cons to everything, and this situation is a perfect example.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.