After a clinic visit, my son will be seeing an orthopedist again

Despite some good results in physical therapy, we have to address his chronic pain

Keara Engle avatar

by Keara Engle |

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Last week, my 5-year-old son, Cayden, had a checkup with his metabolic doctors during a clinic day for his Pompe disease. This visit was mostly typical of those events and went about as expected. I was thankful for the good report from his doctors.

Further, the physical therapist said that Cayden scored higher on his tests at this visit than any he’s taken before. She always has him complete a series of different exercises, and if he can do them, he gets a point. In the past, he wasn’t able to complete many of the exercises, but this time, there were hardly any that he couldn’t do.

But one of the main things I wanted to address at this visit was the worsening of Cayden’s chronic pain. Every day he tells me that his knees hurt. More recently, he’s been complaining about using his stander, which is a piece of adaptive equipment that he uses to bear weight through his legs, since he can’t stand on his own. Cayden screams, cries, and complains about his pain every time he goes in it now.

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When Cayden’s in his stander, my heart breaks to see him in such distress. I can’t bring myself to put him in it and watch him scream and cry the entire time. I told the metabolic specialists about all these issues, and they advised us that it’s time for another visit with an orthopedist. I agree.

Cayden has seen an orthopedist before because of the contractures in his hips, which aren’t uncommon in those with infantile-onset Pompe disease. Beyond his hips, he also has contractures in his his feet.

Back in 2020, Cayden had bilateral hip flexor release surgery to correct the hip contractures. It helped for a while, but then in 2021, he was hospitalized for months on end with pneumonia. During that time, we weren’t able to keep up with the strict exercise regimen that his doctor had given him, so he ended up with hip contractures again. Thankfully, they aren’t as bad as they were before.

He hasn’t been back to the orthopedist since he had a checkup a few weeks after his surgery. However, the metabolic specialists, along with the physical therapist, said that another visit may be beneficial. There he’ll be able to get an X-ray that will show us if he’s having any issues with his bones, such as them slipping out of their sockets.

The physical therapist also recommended we consider serial casting. In this process, the patient gets a series of casts over the course of four to six weeks. In Cayden’s case, he would have casts applied to his feet every week to help stretch out the extremely tight muscles and tendons he has there. After the serial casting is done, we could get him a new pair of Dynamic Ankle Foot Orthosis braces (better known as DAFO) to ensure that his feet don’t get tight again.

I’m a bit nervous about Cayden seeing the orthopedist again. I know it’s necessary, but it’ll be a painful and hard couple of weeks if we choose to go through with the serial casting. Ultimately, I believe it’ll be the best decision, but that doesn’t make it easy.

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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