Motor Milestones: Sensory Motor Trends of Young Children with Classic Galactosemia

ABSTRACT

Speech problems affect about 66% of children with classic galactosemia (CG), but limited evidence is reported on early motor and sensory motor development in this at-risk population. Research has been focused on speech and language development, leaving a paucity of data on motor and sensory differences. This paper describes preliminary data regarding sensory motor and motor development patterns in young children with CG. Babble Boot Camp© (BBC) is an NIH-funded randomized control trial (RCT) implementing proactive interventions designed to support the speech language development of infants with CG. Cases were randomly assigned to a motor-first group (Motor Milestones), receiving virtual occupational therapy through 14 months, or a speech-first group, receiving virtual speech therapy through 14  months. All cases received speech and language therapy from 15 to 24 months. Controls, typically developing infants, did not receive occupational therapy or speech therapy. Participants were recruited through social media, advertisements, metabolic clinics, and the Galactosemia Foundation. Infants in the motor milestones group were assessed with the Developmental Assessment of Young Children and Sensory Profile-2 pre-enrollment (<6 months of age) and post-treatment follow-up at 2.5, 3.5, and 4.5 years of age. Results show that 17.5% of participants with CG had delays in gross motor, 22.5% in fine motor, and 45% in sensory processing. Data from the Motor Milestones portion of BBC are important emerging evidence for occupational therapy in early intervention, preschool, and outpatient settings. This research supports the need for occupational therapy services during early intervention to minimize or prevent long-term motor and sensorimotor delays in infants with CG. Understanding patterns and addressing literature gaps helps support the need for occupational therapists to address motor delays, improve activities of daily living, play, promote functional independence, and provide caregiver education to best support the occupational performance of children with CG.

KEYWORDS:

• Classic galactosemia
• early intervention
• school-based therapy
• prevention
• sensory processing

Acknowledgements

Acknowledgment and thanks to the participating children and their families. Research was supported by the National Institutes of Health (R01 HD098253) and by private donations to the Babble Boot Camp project via the ASU Foundation.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Authors’ Contribution

The authors confirm contribution to the paper as follows: study conception and design: B. Peter, N. Potter, and M. VanDam; data collection: A. Monroe and C. Cupp; analysis and interpretation of results: A. Armstrong, A. Monroe, and C. Cupp; draft manuscript preparation: A. Armstrong, A. Monroe, C. Cupp, and B. Peter. All authors shaped the research and provided critical feedback to the manuscript.

Additional information

Funding

Research funding sources include Eunice Kennedy Shriver National Institute of Child Health and Human Development 5R01HD098253 awarded to B. Peter, N. Potter, and M. VanDam; Arizona State University Institute Social Science Research awarded to B. Peter; Arizona State University New Faculty Start-up Fund awarded to B. Peter; private donations to the College of Health Solutions Babble Boot Camp Gift fund at the Arizona State University Foundation; and the National Science Foundation Social Behavioral and Economic Resource Implementations for Data Intensive Research 1539133 to M. VanDam.