Toddlers Can Experience Chronic Pain, Too

Recently, I reached out to some other moms in our Pompe family to ask about a concern I’ve had for a while. I’ve noticed my 4-year-old son, Cayden, is complaining of pain more than ever. It’s mainly in his legs, but I assume he gets aches and pains elsewhere.

Switching Therapists Has a Big Impact on Our Lives

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.

The Long Drive for My Son’s Nexviazyme Infusions Is Worth It

Recently, my 4-year-old son, Cayden, made the long-awaited change to Nexviazyme (avalglucosidase alfa) infusions, a new treatment option for Pompe disease. We have wanted to switch treatments for a while, but faced some insurance challenges that caused a delay. Nevertheless, we finally managed to get him switched, and…