DEAR ERI COMMUNITY: Hello! I am a pediatric physical therapist (Early Intervention) currently struggling with a little girl (19 months old); significant hypotonia, NO head control, dislocating joints (elbows, shoulders, hips and knees), joint contractures in lower extremities, minimal movement, can roll to her side, no other gross developmental milestones met, bright girl, tracking, babbling and responding to her name and to simple verbal requests with vision and limited upper extremity movements in a supine position or supported in her xpanda chair. Has seen multiple specialists on the east coast and all are scratching their heads. MD has been ruled out, SMA ruled out. Is feeding via g-tube but has nice oral motor munching patterns and drinks from a straw. Thoughts on activities for promoting more head control or muscle activation. Cannot stress this enough, NO head control at this point. Have used a Hensinger, Miami J, and DMO suit to supplement supported sitting activities.
Thanks for any input.