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68 search results for: spasticity


CPRN Adds Two Network Sites in Houston

The Cerebral Palsy Research Network (CPRN) welcomes to new sites to the network — UT Health – Houston and Texas Children’s Hospital. Manish Shah, M.D., a pediatric neurosurgeon at UT Health, who treats kids with spasticity and specializes in neuroimaging research, will be the principal investigator for his institution. Aloysia Schwabe, M.D., a physical medicine…


Site Survey Speaks Volumes About CPRN Study Capacity

As the Cerebral Palsy Research Network (CPRN) prepares its application for the Patient-Centered Outcomes Research Institute (PCORI), we sought very detailed information from our partner Site Principal Investigators (Site PIs) about the children they see and treat in their hospitals. The proposed PCORI application is a study of lower extremity interventions for children with bilateral…


Unpacking Maya’s Intense Feelings Before They Become Tornadoes

Teasing apart and making sense of the behavior of a child with multiple medical issues is often difficult for parents. Sometimes, my husband and I struggle while trying to determine if Maya’s behavior is typical of children or is influenced by pain, sleep deprivation, epilepsy medication side effects, frustration with her limitations, food sensitivities, or…


Musings about Maya’s Food Sensitivities

A few weeks ago we figured out that in addition to being lactose intolerant Maya is gluten intolerant. How I came to figure this out is a longer story, but it really surprised me despite the recent media hype surrounding food sensitivities. Don’t misunderstand me. I have friends and friends whose children have severe food…


CP Daily Living’s Road Travel Essentials

Our family loves to travel. Getting away rejuvenates us and we rely upon our family trips for that much needed change of scenery and break from routine. Sure there are surprises we stumble upon that require creative troubleshooting. Facing new accessibility challenges bring out different emotions for all of us yet, in spite of these…


The Challenges of Potty Training & CP

Potty training is an area of development that has been very challenging for us. For the last three years we have had much confusion about the amount of physical control Maya has over her bowel and urinary tract functions. This has caused us a considerable amount of stress and it is certainly an issue that many…