Pediatric Neurologist Discusses Life Care Plan For Child With Degenerative Nerve Disease

    Pediatric Neurology Expert

    This case involves an elementary-age girl with high-functioning cerebral palsy. She was taken to the hospital after suffering a seizure while in school. While the child was at the hospital, she was administered anti-epileptics, but the physician refused to do an EEG. The child was subsequently admitted for overnight monitoring. She continued to seize throughout the night, but the physician monitoring her EEG did not alert any care providers or respond to these events. Since this episode, the child has regressed in her activities of daily living and her neurological function. She is both ventilator and g-tube dependent, completely wheelchair-bound, and almost completely non-verbal. An expert in pediatric neurology was sought to speak to the type of treatment and life care plan necessary for this child moving forward.

    Question(s) For Expert Witness

    • 1. How often do you provide reports for children with high functioning cerebral palsy?
    • 2. How often do you provide reports for severely depressed kids on G tube, no mobility, no communication etc?

    Expert Witness Response E-157474

    I have the privilege to work with cerebral palsy (CP) and hypoxic-ischemic encephalopathy (HIE) children. The children I work with are of varying levels of mobility, cognition levels/abilities, verbal/non-verbal, sensory losses, dual and/or multiple diagnoses secondary to the CP. They come from all areas of the country and varying family environments. Currently, I have CP cases ranging from a very young child who is non-verbal, non-mobile, cortical blindness, g-tube dependent and oxygen-dependent, who requires suctioning 4-6 times at minimum every hour due to his inability to manage his own secretions. On the other end of the spectrum, I have a young boy, who requires a walker and braces for mobility but who is cognitively, verbally, and developmentally doing very well. He is attending school in regular classrooms with the traditional curriculum, requiring minimal assistance for classroom work and his only “pull out for special class” is during physical education. He has school-based physical and occupational therapy.

    I find not only do these child vary in their physical, developmental, communication and cognitive levels, but each have their own individuality based on their family environment, interpersonal relationships within the home, birth order, number of siblings, etc. Each case is individual and seldom are any two the same. While they may have some similarities, most children have their own paths dictated not only by the medical abilities, but the drive of the child, family and providers, and the team approach or lack thereof that makes a huge impact. Collaboration is the key in proper projection of the needs for this young boy and his family. Strong consideration should be a priority for the significant loss placed upon all of them for the loss of the level of functioning, quality of life and contribution he was able to provide for his own care and interaction with family and peers. Due to his age and level of previous achievements, this will be a difficult situation for him, which can lead to severe emotional issues due to depression, frustration, and the loss of function he once knew. This is unique to most CP cases, as they are aware of the differences in their lives and those of children without CP. But this child was high functioning and has lost his ability to care for his needs, desires and interactions.

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