About JJMF

What is Medically Complex, Neurological Conditions?

Defining medically complex, neurological conditions is not an easy task. Overall, children with these conditions have one or more severe, chronic neurological diagnoses that limit their ability to function or develop normally, and require substantial health care services and treatments. Additionally, they often need frequent or prolonged hospitalization.

What health conditions do children with complex, neurological conditions face?

Each patient is different and the chronic conditions they suffer from vary from person to person. Some examples include:

  • Relentless seizures (potentially hundreds to thousands a day) or other neurological impairment, impacting their ability to make developmental progress and perform normal daily activities as they age.
  • Cognitive effects include having difficulty communicating and behavioral problems
  • Motor deficits include difficulty walking and fine motor function
  • Sensory deficits include hearing and visual dysfunction
  • Other conditions, such as feeding difficulties and poor growth, nutrition and bone development, organ issues, and more.

If a child is diagnosed as medically complex, why can they be described as ‘undiagnosed’?

While children with these conditions are diagnosed as ‘medically complex’ or ‘medically fragile,’ the term is generally considered a wastebasket or vague diagnosis, and the overarching condition they suffer from is undiagnosed and unknown. Without an official diagnosis or answer to the root cause, children with these undiagnosed, neurological conditions and their families often face insurance challenges, as well as experience fragmented care due to a lack of one known or understood condition or care path. As a result, they are often left to navigate and coordinate care for these complex and chronic conditions on their own. For these reasons, the JJMF prefers to use the term undiagnosed, neurological conditions to describe their medical condition.

How many children are affected?

It is estimated approximately 300,000 children in the U.S. (.2 – .3 percent) are considered to have medically complex, neurological conditions. This accounts for approximately 50 – 60 percent of all children with a medically complex diagnosis.

While medically complex conditions are considered rare, the number of children affected is growing and accounts for approximately 15 – 33 percent of all child health care spending (approximately 50 – 110 billion annually).

To learn more about medically complex, neurological conditions, read the stories of families the JJMF has helped.