Health Supervision Guidelines for Medically Complex Kids

• AAP Health Supervision Guidelines for:

  • Down Syndrome

  • Achondroplasia

  • Fragile X

  • Marfan

  • Prader-Willi

  • Neurofibromatosis Type 1

  • Sickle Cell

  • Williams

  • Turner

  • Autism Spectrum Disorder

  • Home Care of Children with Complex Health Care Needs and Technology Dependencies

• Other sources

  • Care of the Child with Medical Technology - Peds in Review

  • DiGeorge - Journal of Pediatrics

  • Critical Elements of Care for Cerebral Palsy - The Center for Children with Special Needs, Seattle Children’s Hospital

  • Critical Elements of Care for Cleft Lip and Palate - The Center for Children with Special Needs, Seattle Children’s Hospital

  • Developmental Milestones for Preemies - healthychildren.org by the AAP

• Less common genetic disorders use GeneReview (akin to Smith’s but online)

  • Family-friendly resource for genetic disorders: Genetics Home Reference

online resources for providers

The “HEADS AT” Training Tool for Residents: A Roadmap for Caring for Children With Medical Complexity: article with tool for visits with complex patients.

Peds in Brevard Parent Resources and Medical Library

Online resources for parents

Kristie Malik, 7/2019