I had a chat over coffee the other day with my friend and colleague, Nancy, who works with children with special health care needs (CSHCN). She had initiated the meeting to talk about a workshop I periodically give on recognizing kids and families who might benefit from a genetics evaluation. This, however, was not the real purpose for her wanting to connect with me. Finally, after this preliminary discussion, she got to her real purpose:
"But what about their other health needs; the health needs besides the "special" ones? What about the health needs that are more like what other kids have?"
She went on to recount a story of how, as a school nurse, she had discovered that a majority of kids in a special education classroom were found to have either a visual or hearing impairment that had gone undiagnosed because no one had thought to screen them for these common conditions. Parents and teachers both were amazed in the improvement that many of the children made once they could see or hear better after intervention. The moral of the story: Kids have other things that need checking and maintenance other than just their most obvious health needs.
She is right about this. Sometimes we treat kids with disabilities as if all that matters for their health is the one, unusual feature that gains them entry into the CSHCN club. She had recognized that sometimes the routine screening and care that are included in well child care visits and child and teen checkup screenings are not done well enough for these kids. Things like routine tetanus shots, hearing and vision screening, and so forth. It gave me pause, I have to say. These kids are always going to see the doctor, but much of the time they are going to a specialist who is treating the part that defines their"special needs" or for some other acute issue, not the more routine maintenance or preventive care that most "normal" kids receive as a matter of course.
Our discussion moved from well child care and screening to transition to adult care and prevention across the lifespan. These kids are living longer and longer. Many are growing into adulthood, passing through the stages of young adults, middle age and even old age. The need to consider strategies to assure the best overall health by preventing or ameliorating chronic diseases is gaining relevance for this population.
So, this is where family history comes in. We need to broaden our thinking of how we use it. With children who have special needs, we regularly use family history as a tool for diagnosing the underlying etiology of their functional disabilities. Might the same family health history process be used to screen for preventable conditions such as cardiovascular disease, cancer, asthma, or mental illness or familial behaviors such as alcohol use, exercise habits, and diet, that should also be considered for providing the best possible care for this child and his/her family? It seems like this should be doable.
Maybe it is being done. If you are a practitioner who cares for these kids or if you are a parent with a child with special needs, please tell us of your experiences with well child care, especially as it relates to using family health history to screen for familial risk factors (both disease or behavioral) for common, chronic diseases, and what you suggest for health promotion and disease prevention across the lifespan.