Adaptive devices

Over the years, our family has become quite familiar with various types of medical and adaptive equipment. My 4-year-old son, Cayden, has used several medical and adaptive devices to help make his life with infantile-onset Pompe disease a bit easier. However, like any kid would, he eventually outgrows…

I can remember my 4-year-old son’s first surgery like it was yesterday. Cayden was just shy of 2 months old when I watched the anesthesia team wheel away my tiny baby. It was the first of many surgeries for him, but also one of the hardest. We opted to…

I knew having a child meant that I would lose a lot of sleep, but I didn’t realize the extent of it. Most children sleep through the night by age 4, but my son, Cayden, does not. There are many reasons why sleep is challenging for him, but it doesn’t…

Thanksgiving and Christmas are often associated with two things: food and family. But what about those who can’t eat? My 3-year-old son, Cayden, is picking up on the fact that he cannot eat orally. With the holiday season just around the corner, I’m worried about how this will affect him.

Training with continuous positive airway pressure therapy, known as CPAP, may help to normalize speech abnormalities in children with Pompe disease, a small pilot study shows. Certain outcomes, including the speech intelligibility score (SIS), “were significantly improved” over the course of the six-month study, but as two of the…

One of the symptoms of Pompe disease is muscle weakness. Due to this, many children who have been diagnosed with infantile-onset Pompe disease will be required to wear some type of orthotic braces that are specially designed by an orthotist. When my son, Cayden, was about 15 months old,…

While the effects of late-onset Pompe disease on everyday life are far-reaching, there are steps you can take in your daily routine to help ease these difficulties and work around your limitations. It just takes some advance planning, a little bit of creativity, and perhaps some adaptive equipment.

Patients with late-onset Pompe disease (LOPD) usually develop breathing problems as the disease progresses. If you have LOPD, you may eventually need ventilation to aid your breathing. Here is more information about how Pompe affects breathing and about ventilators that may help to ease the disease’s symptoms. How…

Pompe disease is characterized by progressive muscle weakness and disability. A number of adaptive devices are available to maintain patients’ quality of life. What is Pompe disease? Pompe disease is a rare genetic disorder caused by mutations in the GAA gene. This gene contains the instructions necessary…