Tag: ACTH

Faith in Hard Places, Medical, Opsoclonus Myoclonus Syndrome, Parenting

Speaking the Language of Rare – Part 1

Brandi Crum, LMFT

In Speaking the Language of Rare – Part 1, when you live with a rare diagnosis, medical terms start to feel like household words. In our world, terms like IVIG, ACTH, and Plasmapheresis are as common as “shower” or “cheese” or “cat.” Even the littlest kids around here know what they mean. But I still… Continue reading Speaking the Language of Rare – Part 1

Faith in Hard Places, Medical, Opsoclonus Myoclonus Syndrome

When the Protocol Doesn’t Work

Brandi Crum, LMFT

When the Protocol Doesn’t Work – Living Outside the Lines in the OMS World. In the world of Opsoclonus Myoclonus Syndrome (OMS), few names are as respected and recognized as Dr. Michael R. Pranzatelli. His work changed the trajectory of care for children like my son, H. He devoted his life to researching OMS and founded… Continue reading When the Protocol Doesn’t Work