How Well-child Checks Are a Break From Specialists

Keara Engle avatar

by Keara Engle |

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When my 4-year-old son, Cayden, goes to the doctor, it’s usually to see one of the many specialists for his infantile-onset Pompe disease. While they are helpful and the appointments are necessary for us, I know that not every child is normally seen and followed by so many doctors.

These specialist appointments differ a lot from the typical well-child checks at a pediatrician’s office. A visit with a specialist is way more in-depth and normally takes much longer than the pediatric appointments.

However, seeing the pediatrician for Cayden’s well-child checkups brings me some sense of normalcy. These appointments are very basic, for the most part. The nurses check Cayden’s height and weight and take his vital signs. The doctor then comes in to tell us how Cayden is developing and to inform us if he’s due for any vaccines, which a nurse administers at the end of the appointment. Then we’re out the door and on our way home.

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At Cayden’s four-year well-child check last week, his pediatrician was impressed with his progress. They don’t see him in the office too often since he is already being carefully monitored by so many specialists at the Children’s Hospital of Philadelphia. So when I bring Cayden to the pediatrician for his well-child checks, they always make sure to let me know how impressed they are.

It makes me feel good to know that the doctors are seeing all the progress he’s made. They are like me and recognize Cayden for his abilities, not his disabilities. Although he’s not doing many things a typical child his age is doing, he does a lot more than the doctors could have ever expected. They weren’t sure what Cayden would be able to do as he aged.

The doctor and nurses were impressed to see Cayden using his iPad to communicate at his most recent appointment. He was previously getting frustrated at his appointments because he couldn’t voice his thoughts and feelings. Now he can let us know how he’s feeling, and we can help him find ways to work through it.

Cayden was scared to get his vaccines, for instance. He kept saying the word “no” on his iPad over and over. We had to explain to him that these shots were necessary to keep him safe and healthy, and of course, he would get cool bandages for his boo-boos and a sticker afterward for being such a good patient. The bribes seemed to work because he was able to calm down and stay still so the nurse could administer the shots.

While no doctor appointment is fun, I do get comfort knowing that well-child checks are something that almost every child has to go through. So many specialists are usually seeing Cayden that it makes me look forward to those quick in-and-out checkups at the pediatrician every year or so.

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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