Just Say HIE

Hope for HIE

Just Say HIE is the official podcast of the Hope for HIE foundation, a nonprofit serving the worldwide community of HIE families, whose children have been diagnosed with hypoxic ischemic encephalopathy. Just Say HIE brings the stories of the HIE community from around the world to you, exploring each unique journey and connection with its own version of HOPE to share. Support this podcast: https://anchor.fm/justsayhie/support

BONUS EPISODE: HIE, Cerebral Palsy & Dystonia
May 19 2021
BONUS EPISODE: HIE, Cerebral Palsy & Dystonia
Dr. Bhooma Aravamuthan, a pediatric neurologist, movement disorders expert, and lab researcher tackling HIE and dystonia, joins us during Cerebral Palsy Awareness Month to discuss diagnosis of cerebral palsy and dystonia in HIE, transitioning from pediatric to adult medicine, treatments and surgical options for dystonia, and some strategies to help partner with your child's medical team if you suspect or have confirmed dystonia. We are grateful for Dr. Aravamuthan's involvement in our Medical Advisory Board. Key show notes: Advocacy continues to push for earlier detection and diagnosis of cerebral palsy, which can improve access to therapy services and connections to other families and people in the cerebral palsy community.A call for better transitions of care for children with cerebral palsy aging out of pediatric services and transitioning into the adult medicine world, and the needs of adults with cerebral palsy.Many times getting a diagnosis for dystonia is difficult, especially in a child with CP after HIE.Dr. Aravamuthan works with both animal and human research to improve diagnostics and treatments for dystonia that comes from HIE, which traditionally has not been receptive to treatments that may benefit those with dystonia from non-HIE causes.Some signs that can help differentiate spasticity vs. dystonia = spasticity maintains pretty much the same throughout the day. Dystonia is variable and triggerable and may be triggered by trying to move or excitement-induced movement.Families can help give more insight to their pediatric neurologist by capturing movements on video and sharing with their provider and team for analysis, to augment the in-person clinical assessment.  More research is needed into treatments. Evidence is now showing some medications are not as effective, and some may be more effective in treating. Surgical options such as Deep Brain Stimulation in children identified earlier than seven years old can be effective, and intrathecal Baclofen pumps may be beneficial when placed up on the spine further than when it is traditionally used for spasticity management may also be a consideration.  --- Support this podcast: