Resuming Home-based Therapies Is a Help

Keara Engle avatar

by Keara Engle |

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This month, we started back up with home-based therapies for my 3-year-old son, Cayden. He receives a few different services, such as physical therapy, occupational therapy, and speech therapy. Each of them is extremely beneficial for Cayden, who has infantile-onset Pompe disease.

He has been getting these different therapies his whole life. However, he hasn’t always received these services at home. Cayden got home-based therapy until he turned 3, but afterward we transitioned him into a preschool where he was able to continue receiving the therapies.

Sadly, I had to make the hard decision to pull Cayden from his preschool after just a few months because I wanted to keep him home during the winter cold and flu season. He had gotten very sick and was hospitalized on two occasions last year, so I did not want to risk him getting sick again by sending him to preschool. This decision wasn’t easy because I knew how much he enjoyed going to school, but it was the right decision for his health.

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Being home meant that Cayden was no longer receiving his therapies. I’ve taken him to outpatient physical therapy centers before, but I’ve been trying to keep him inside as much as possible lately. I was unsure if we would be able to get Cayden back into home-based therapies, so I decided to reach out to our insurance company for advice.

Thankfully, the insurance company was a big help. It was able to get everything set up and approved for Cayden to receive home-based therapies again. This isn’t always allowed, but because of our situation, the insurance company was able to understand our need for keeping Cayden inside.

We’ve met all of the new therapists and have enjoyed the sessions he’s had so far. But there are a few downsides. The therapy sessions at home aren’t as long as they would be if he were in an outpatient clinic. At-home sessions last 30 to 45 minutes, whereas outpatient appointments are about an hour long.

Another downside is that we don’t have all of the equipment at home that you would see in outpatient physical therapy centers. We do have a few pieces of equipment, such as a stander that Cayden goes in to practice standing. We also have a few different chairs and stools for him to sit on so that he can practice sitting without using his hands to help support himself. But we lack other equipment.

Despite these issues, home-based therapies are very useful for us. They allow Cayden to receive his therapies without the fear of him getting sick by being out in the public. I’m hopeful that he will be able to receive his therapies again in an outpatient setting once cold and flu season is over. But for the time being, we’re very thankful for the opportunity of home-based therapies.

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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