MDA supports our clinic, and has an MDA representative present at our weekly clinic to help support our families. This has allowed our team to care for patients with a collaborative approach, and work together to provide high-level care for each patient. We closely monitor each patient, and collaborate with other providers to make sure the patient is receiving an individualized treatment plan.
This group of patients also works with the Pulmonary Medicine team to make sure they are meeting adequate respiratory expectations. The Pulmonary Team uses PFT to measure lung function, and help understand if higher level respiratory needs are necessary. This team manages respiratory treatments, cough assist, and helps to manage any supportive respiratory machines (CPAP, Bipap, etc.)
Our therapy team meets with this population to evaluate strengthening and stretching needs. Each patient sees a physical therapist, occupational therapist, and orthotist to assess for bracing needs.
Our bone health APN’s utilize DEXA scans to evaluate metabolic bone health, and provide recommendations based on findings.
We closely monitor growth charts, and work with our nutrition team to make sure that each patient has an opportunity to discuss nutritional needs, and create individualized meal plans to meet each patients needs.
We have a genetic counselor available in clinic to help families understand the inherited condition, and provide support for family planning.
Our Neuromuscular team examines each patient, and monitors their progress overtime. We discuss all treatment opportunities, and work to match the individuals unique genotype with the best treatment plan. We work to educate families, and help answer any questions in regard to research and what it means for their child.
Spinal Muscular Atrophy Clinic
The first FDA-approved therapy for SMA, Spinraza, is provided by our clinicians. It is our position to provide access to treatment and educate families on expectations of treatment options.
We provide the updated standard of care for each patient with SMA. The standard of care includes: diagnosis, rehabilitation (specific to non-sitters, sitters, and ambulant patients), orthopedic management, pulmonary care (airway clearance, ventilation management, medications (nebulized bronchodilators, mucolytics, Glycopyrrolate), supplements, and immunizations (annual influenza vaccination > 6 months).
Our Neuromuscular team provides the latest information in research and make sure the patient is receiving the best treatment possible. We closely monitor their progress through physical exam.
Genetic Counselors provide information about the inheritance patterns, and facilitate the conversation for future family planning.
Our dietitian helps to manage nutritional needs, and monitors changes to dietary plan. We closely monitor the patients weight and height to make adjustments to their diet when needed.
Our pulmonary team helps to manage the respiratory needs of each patient. Each patient with SMA requires a different level of respiratory support. The pulmonary team manages medications, ventilator support, and makes sure the patient is adequately ventilating.
Our clinical coordinator and neuromuscular team help to coordinate insurance coverage, visits, labs, physical therapy, dosing schedule, and answer any questions the families have in regard to treatment with Spinraza.
We provide a neuropathy clinic that addresses peripheral nerve diseases.
Our team focuses on managing the symptoms of nerve disease, maximizing mobility through therapies, and discusses inheritance patterns of hereditary neuropathies with families.
We keep families up to date on the status of research and approaches to managing the effects of the disease.