Diagnosing and Treating Neurodegenerative Disorders
Led by Deepa Rajan, MD, FAAP, the team at the CCNG is committed to helping families search for answers surrounding their children’s rare neurodegenerative disease and to building a strong support system for them.
What does an evaluation at the CCNG look like?
In order to have a clear picture of where each patient is in their disease progression, our clinic assesses multiple neurodevelopmental areas simultaneously. This means that during a visit, patients might receive some, or a combination of, the following tests, individualized to their disease, stage, and clinical need:
- A comprehensive physical and neurological examination
- Neurodevelopmental evaluation
- Cognitive testing
- Motor testing
- Speech and language assessment
- Educational testing
- Swallow studies
- Neuroimaging – MRI of the brain, spine etc
- Neurophysiological testing: nerve conduction studies, EEGs etc.
- Hearing tests and other audiology evaluations
- Ophthalmology evaluation
- Genetic evaluation, counselling and studies
This comprehensive evaluation helps us understand how your child’s disease has affected their health – how they are growing, developing and learning over time and which treatments are most likely to help optimize their neurodevelopmental outcome.
Treatment and Support Services
Novel Therapeutic options and clinical trials for rare diseases.
Because of our extensive experience in the assessment and management of children with rare neurodegenerative disorders, Dr Rajan and her team has a unique perspective on the complex needs of these children and their families. The team will counsel and support families through the course of their child’s condition, assisting them understand their therapeutic options, procure appropriate treatment and help advocate for parents as they navigate multiple complex medical, social and educational concerns for their children.
Bone Marrow Transplant & Cell Therapy
Support For Families When They Need It Most
Individualized Education Plans (IEPs):
Public schools provide IEPs to meet the unique educational needs of children with difficulty learning and functioning. After our comprehensive evaluation, our team may make recommendations about:
- Adaptive equipment
- Augmentative communication
- Visual and hearing aids
- Behavioral interventions
Family Support And Multidisciplinary Care
Our team will help coordinate multidisciplinary evaluations and help families with planning on appropriate interventions, management strategies, and palliative care when indicated.
Assessments Offered:
- Comprehensive physical and neurological exams
- Nutrition and feeding
- Hearing tests
- Cognitive testing
- Speech and language assessment
- Motor testing
- Educational testing
Support Services Offered:
- Advocacy and education
- Advice about individualized education plans (IEPs)
- Management recommendations, including adaptive equipment
- Medical treatment for seizures and spasticity
- Visual and hearing aids
- Behavioral interventions
- Sensory integration
- Comfort measures
- Medical decision making