Therapy and counseling

Talking about mental health isn’t the easiest thing to do. Sharing our feelings can be uncomfortable, and asking for help may seem like exposing a part of ourselves we’d rather keep hidden. I’d always shared my feelings openly and leaned on family and friends. For a long time, I thought…

In my last column, as part of “The Pompe Community Diaries” series, I introduced 37-year-old Michael Thames, a behavior analyst from South Carolina who has Pompe disease. When he was younger, Thames was confident in his ability to be self-sufficient. But from the beginning of his training in…

Many folks don’t know what an implantable venous port is and what it’s used for. However, my 6-year-old son, Cayden, is very familiar with it and its purpose. Cayden received a port when he was just 8 weeks old, which is atypically young for a child. He was having…

The use of a multidisciplinary treatment approach was described in a recent case report of a boy in the U.S. with late-onset Pompe disease (LOPD) and chronic pain. The strategy consisted of orthopedics, physical therapy, and psychosocial therapy. The boy also had behavioral and mood disorders, which could further…

My 4-year-old son, Cayden, has been receiving multiple therapies every week for years. He started physical therapy when he was an infant, then speech therapy, and eventually occupational therapy. All are important for those with infantile-onset Pompe disease, which Cayden was diagnosed with at just 1 month.

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…

At least once a year, parents of disabled children sit down with teachers, therapists, and other important people at an individualized education plan (IEP) meeting. While IEP meetings are meant to be genuinely helpful, they can take a toll on special needs parents.  During the…

If your child has been diagnosed with infantile-onset Pompe disease (IOPD), you may need a multidisciplinary team of specialists to ensure the best care possible. IOPD causes a buildup of glycogen (a large sugar molecule that the body uses to store energy), due to a lack or low levels…

The diagnosis of a chronic, progressive disorder such as Pompe disease for yourself or a family member can be life-altering. Psychological support can help reduce the added stress and negative emotional impact of such a diagnosis on you and your family. The following will provide some information about the…

Living with a chronic disorder such as late-onset Pompe disease can lead to anxiety, stress, and feelings of isolation. If you have the disease, recreational therapy may help to improve your psychological and physical well-being. What is Pompe disease? Pompe disease is a debilitating and progressive disorder that’s…