Proteus Syndrome Case Study

Ting, a twelve-year-old Chinese immigrant female, is medically diagnosed with Proteus syndrome. She has soft tissue masses in her chest and neck, a malformed mastoid bone, a brain tumor, a nonmalignant abdominal tumor, a neurogenic bladder, and musculoskeletal deformities. Additionally, her face, head, and digits are asymmetrical, her legs are of unequal length, and she has a gastrostomy feeding tube. At age 2 years she developed a brain infection, resulting in developmental delays and seizures. At age 10 years, she lost the ability to walk or bear weight on her legs, from spinal cord compression. Between the ages of 10 and 12 years, she incurred four hospitalizations for aspiration pneumonia, due to dysphagia and severe reflux. Additionally, she was admitted for abdominal pain as a result of compression of her nerves, soft tissues, and organs, constipation, gastrostomy tube irritation, and difficulties with feeding. Two of seven hospitalizations were for gastrointestinal bleeding caused by Helicobacter pylori infections and chronic use of NSAIDS. Effects of Proteus syndrome produces failure to thrive, severe pain including neuropathic pain, …show more content…
The first foster home was three hours away, preventing frequent visits and requiring regular phone calls. She attended an elementary school, taking special education classes. Five months later Ting moves to a closer foster home, where the foster parents provide daily physical therapy, teach her self-calming techniques, and eliminate self-destructive behaviors. Family visits are regular and Ting is seen smiling and laughing, communicating her needs through consistent use of sounds, comprehends simple phrases, and loves to play with water. Additionally, her pain is effectively managed resulting in reduced agitation, increased mobility, weight gain, and regular sleep habits of ten hours a night with occasional daytime naps. (Turner,