Coronavirus Update:What patients and families need to know
Pediatric Learning Disabilities and Neurofibromatosis
As many as 80% of all children with neurofibromatosis will have associated difficulties that affect learning, including attention problems, memory problems, spatial perception difficulties, and selective problems in reading or mathematics. These learning disabilities may dramatically affect the lives of children with neurofibromatosis; however it is believed that early diagnosis and intervention can lead to better outcomes.
Although researchers do not fully understand why neurofibromatosis type 1 is associated with cognitive disabilities, the same gene defect that has been associated with tumors (a loss of the NF1 gene) seems to underlie these difficulties, as the lack of the NF1 gene results in abnormal growth and maturation of the brain and abnormal brain circuitry.
The diagnosis of learning disabilities in children with NF1 is based on a high level of expectation of such difficulties. Patients with NF1 who are seen in the Neurofibromatosis Clinic and the Neurology Clinic are screened for attention difficulties or any evidence of developmental delays. Children displaying such abnormalities should undergo detailed neurocognitive testing, which is available through the Gilbert Family Institute. The institute also works closely with schools to determine which children are at risk or if children are showing early evidence of cognitive or other learning disabilities.
Findings on MRIs can also be helpful, and children with a large number or volume of areas of immature brain (called focal areas of signal abnormality – FAST or unidentified bright objects – UBOs) may be a higher risk for development disabilities.
The most important treatment for children with learning disabilities is placing them in appropriate school settings with appropriate support, The neurocognitive team at Children's National Hospital works with various school districts in an attempt to place these learning-disabled children into the best possible learning environments.
There are other studies underway at Children's National, in collaboration with other institutions such as the Royal Alexandra Hospital for Children at Westmead in Sydney, Australia. These studies attempt to identify early in life those children who are at risk and determining the pattern of development for children with early developmental delays as they enter into the school years. These studies also are using innovative neuroimaging, including functional MRI.
Senior Vice President, Center for Neuroscience and Behavioral Medicine
Director, Gilbert Neurofibromatosis Institute
Director, Brain Tumor Institute
Learn more about our world-renowned Gilbert Family Neurofibromatosis Institute, which helps children with neurofibromatosis type 1 or 2 live more normal lives.
Our pediatric neuroscience team is the largest in the country, allowing us to offer our vast experience to patients and families.
Share your birthday with a child. Celebrate your life, and give a chance to someone who desperately wants to have as many as you.
Make it happen
Two and a half years ago, Adamstown, MD residents Lauren and Sean Shillinger gave birth to a beautiful little girl named Brynleigh. Brynleigh was their first child, and Lauren experienced a full-term pregnancy and a normal delivery. But when Brynleigh was just 9 1/2 months old, Lauren and Sean started to notice something unusual in Brynleigh’s behavior.
Read More of Brynleigh's Story