eating

I recently attended a meeting for my 6-year-old son, Cayden, at his elementary school. So many people are working with Cayden at school, including his teacher, nurse, and physical, occupational, and speech therapists. Because of this, we felt it was important for all of us to sit down and…

Because of his infantile-onset Pompe disease, my 5-year-old son, Cayden, has always relied on a feeding tube for nutrition. For the first six months of his life, he used a nasogastric, or NG, tube. After that, he needed something more permanent, so he underwent surgery to have a…

My 5-year-old son, Cayden, recently had a swallow study done for the first time since he was 3. Although he cooperated much better this time, we still didn’t get the desired results. When he was younger, Cayden required many swallow studies due to his infantile-onset Pompe disease. Because…

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.

Eating and drinking or nursing can pose a problem for patients with Pompe disease. These patients may require feeding tubes to ensure safety and proper nutrition. Here is some information about feeding problems in Pompe disease and options for different feeding tubes. What is Pompe disease? Pompe disease is a…