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Follow-up and Treatment

Michael's IEPclick to enlarge photograph

Michael's IEP includes goals for improving communication skills.

Early identification and treatment of learning disabilities is critical to minimizing future problems. TSC specialists stress that anyone diagnosed with TSC should be carefully monitored for developmental weaknesses, even if they show no signs of abnormality at the time of diagnosis. Every three to six months, a neurologist or pediatrician should monitor the development of language as well as gross and fine motor skills of a child with TSC. In addition to this routine physician assessment, TSC specialists recommend that a child between the ages of 12 and 18 months receive a developmental evaluation by a neuropsychologist. It is recommended that subsequent evaluations be conducted again at two to three years of age, and then approximately every three years thereafter or at times of major transitions, such as entering first grade and middle school. Any indication of a cognitive disorder or learning disability suggests the need for intervention, such as occupational, physical, and/or speech therapy.

Children with TSC who show no signs of cognitive problems or learning disabilities generally continue on to mainstream schooling with standard assessments conducted by school personnel and support provided when necessary. Children identified with such difficulties typically enter special education programs and may follow an individualized educational plan (IEP).

An IEP is a written education plan for a student with learning disabilities that is developed by a team of professionals (teachers, therapists, etc.) and the student's parents. An IEP is based on a multidisciplinary evaluation of the student, documenting how the student is currently doing, what the student's learning needs are, and what services the student will need. IEPs are reviewed and updated yearly and give particular consideration to the results of neuropsychological testing and assessment by an educational psychologist. Specialists recommend that students with TSC undergo neuropsychological testing every two to three years and that appropriate adjustments be made to the IEP at that time.

Next Steps

It is important to remember:

  • Approximately 60 percent of people with TSC are of broadly defined normal intelligence.
  • Severe cognitive impairment affects approximately 40 percent of people with TSC.
  • TSC specialists don't know for sure how the disorder results in learning disabilities, but they think that TSC-related seizures might cause cognitive impairment, or that cortical tubers might cause both seizures and cognitive problems.
  • Those who have TSC and are of normal intelligence run a higher risk than the general population for some learning disabilities.
  • TSC may impact an individual's ability to learn by affecting any of four areas: intelligence, language, executive functioning, and attention.
  • Early identification of learning disabilities can enable people who have them to get the assistance they need.
  • Assessment of learning disabilities should be formal, objective, and conducted by a qualified neuropsychologist, developmental pediatrician, or psychologist.
  • Young people with TSC should be monitored regularly for the development of specific learning problems. If and when these problems are identified, they should be addressed in an appropriate way, which may include an individualized education plan (IEP).

Relevant Specialists

Developmental Pediatrician

A developmental pediatrician is a physician who addresses special needs or special care issues for children with developmental disorders such as TSC.

Neurologist

A neurologist is a physician who specializes in disorders of the nervous system. A neurologist who treats people with TSC is trained to recognize the neurological symptoms and brain abnormalities characteristic of the disorder.

Neuropsychologist

A neuropsychologist is a psychologist with specialized training in brain-behavior relationships and the evaluation of cognitive functions. Neuropsychologists use a battery of standardized tests to assess specific cognitive and behavioral functions and identify areas of cognitive impairment as they relate to brain functioning. A neuropsychologist who treats people with TSC is knowledgeable about the specific cognitive and behavioral issues that are common to the disorder and knows what treatment options are most effective for these issues.

Psychologist

A psychologist is a professional who has earned a doctoral degree in psychology and has undergone clinical training. He or she is a specialist in the diagnosis and treatment of mental and emotional problems. His or her role involves evaluation, testing, counseling, and/or psychotherapy, without the use of medications.

You can find a list of on-staff physicians on the Herscot Center for Children and Adults with TSC Web site.

Additional Resources

The Arc
http://www.thearc.org
The Arc is an international organization for individuals with developmental disabilities.

Federation for Children with Special Needs
http://www.fcsn.org
The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities.

Learning Disabilities OnLine
http://www.ldonline.org/
Learning Disabilities OnLine is a resource for parents, teachers, and other professionals who care for or work with people with learning disabilities.

Misunderstood Minds
http://www.pbs.org/misunderstoodminds
Misunderstood Minds is a PBS Web site and video series that provides information about learning disabilities and explores the personal stories of five children who have them.

U.S. Department of Education
http://www.ed.gov/parents/needs/speced/edpicks.jhtml?src=ln
The U.S. Department of Education has resources for parents of children with special needs.

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This content was last reviewed on March 30, 2006.