For Parents and Caregivers of Children With Moebius Syndrome

Working With Health Care Professionals

Working with medical professionals is an everyday occurrence as you raise a child with Moebius syndrome. Getting to a level where you feel comfortable advocating for your child may take some time. The resources below will help you learn about common medical terms and practices relevant to Moebius syndrome and guide you in building a medical binder for improved record keeping and advocacy.

Finding a good medical provider can take time. A good provider will not make you feel rushed, will make you feel listened to, and will make you feel comfortable asking them questions. When in doubt, ask more questions and/or seek second opinions. Check out this guide from The New York Times for more tips and ideas on how to take charge of your medical care and advocate for a child.

Getting yourself organized and learning key medical terms can help you better navigate the healthcare system. 

Making a Medical Binder

A binder with divided sections can help you manage medical paperwork. Make sure the binder has pockets, so you can slip in items like CD-ROMs of MRI images and paper handouts. 

A thorough medical binder will include:

  • A complete list of doctors and specialists, with the name of the doctor, the name of the practice, phone number, fax number, and complete address
  • A current medication list with dosages and how often given
  • Backup copies of insurance cards and IDs (front and back)
  • A list of allergies and food sensitivities
  • A list of current diagnoses
  • Surgical histories
  • Medically relevant, but easy to forget information, such as g-tube size or trach size and type
  • A list of care providers and their contact information
  • A list of emergency contacts and their contact information
  • A short medical history with most recent diagnoses and lab results
  • A family history
  • Photographs of the patient to demonstrate any changes, such as eyes turning inward, tongue positioning, etc.
  • An advance directive and emergency room protocols
  • Blank pages for note-taking

If you’re just getting started and feeling overwhelmed, start a folder or empty binder where you can put all of the handouts and paperwork that you’re given. You can work through organizing and updating the binder as you feel more emotionally prepared and have more time. 

Key Medical Terms

Moebius syndrome involves a cross-functional medical team for initial evaluation and ongoing management. Below are descriptions of disciplines you may be referred to or want to seek consultations from. If seeking treatment for a child, please make sure to see a pediatric provider of the discipline.

Audiology

Audiologists monitor hearing development. They will evaluate hearing, measure hearing loss, and provide hearing aids as needed. 

Craniofacial Clinics

Craniofacial clinics are multi-disciplinary centers focused on differences of the face or head, caused by congenital conditions, disease, or trauma. While the teams vary from clinic to clinic, a plastic surgeon is often a key player on the staff.

Dentists

Dentists monitor oral health. Moebius syndrome may come with additional dental concerns due to mouth structure.

Early Intervention

In the United States, early intervention programs are designed to help children with developmental delays and/or disabilities. Since the programs are run by each state, the programs vary widely in what they offer. Early intervention may include physical therapy, occupational therapy, vision therapy, speech therapy, free adaptive equipment, and more. Learn more.

ENT (Otolaryngologists)

ENTs are ear, nose, and throat specialists. They are familiar with conditions that impact the airway, sinuses, head, and neck. They can also advise and remove tongue, lip, and buccal ties. They may also diagnose and treat vocal cord paralyzation, Pierre-Robin sequence (PRS), secretion management, and swallowing disorders.

Gastroenterologist (GI)

Gastroenterologists have expertise in the digestive system. They may be consulted for feeding tubes, reflux, constipation, and other gastrointestinal concerns. 

Genetics

A geneticist or genetics counselor can diagnose, counsel, and treat families with genetic (hereditary) conditions. While Moebius syndrome does not have a currently known genetic cause, some genetic conditions may present similarly to Moebius syndrome in clinical evaluations. These professionals may also be involved in genetic research of Moebius syndrome.

Neurology

Neurologists hold expertise in the operation of the body’s nervous system, including the brain, spinal cord, and nerves. Neurologists are a crucial players on the team to diagnose Moebius syndrome.

Occupational Therapy (OT)

Occupational therapists (OT) focus on daily activities, such as eating and dressing, and fine motor, visual motor, and sensory processing skills. OTs typically work closely with SLPs and have shared goals towards feeding. 

Ophthalmology

Ophthalmologists are surgically trained medical professionals who diagnose and treat eye conditions. They are doctors of medicine (MD) or doctors of osteopathy (DO) who have extensive training in eye and vision conditions. Ophthalmologists are different from optometrists and opticians, who do not have medical degrees. 

 

Individuals with Moebius syndrome benefit from an evaluation by ophthalmology and continuous monitoring for dry eye, the development of strabismus, and other eye conditions.

Orthopedics

Orthopedic doctors treat muscle, bone, and joint conditions and injuries. They can diagnose and treat club feet, limb differences, hand differences,  and other conditions.

Physiatrist or Physical Medicine and Rehabilitation (PM&R) physicians

Also known as physical medicine and rehabilitation (PM&R) physicians, physiatrists evaluate and monitor conditions of the bones, joints, muscles and nervous system. These providers can prescribe braces, walkers, standing devices, and other assistive devices. They can also help manage chronic pain.

Physical Therapy

Physical therapists are trained in gross motor skills, which involve large muscle groups that help with activities like walking, running, kicking, and climbing. Physical therapists will work to improve a child’s strength and endurance, range of motion, and balance and coordination.

Plastic Surgery

Plastic surgeons treat abnormalities of the face, skull, and hands, cleft lip and palate, and more. This speciality treats children for cleft repairs, smile surgeries, hand surgeries, and other craniofacial concerns.

Speech Pathology (SLP)

According to the American Speech-Language-Hearing Association, “speech-language pathologists (SLPs) work to prevent, assess, diagnose, and treat speech, language, social communication, cognitive-communication, and swallowing disorders in children and adults.” SLPs may treat speech, feeding, pronunciation, oral motor movements, and receptive and expressive language.

July 2023

A Guide for For Healthcare Providers

Check out our new guide designed specifically to help medical professionals better understand and support patients with Moebius syndrome. The guide is available for download below, or if you live in the United States, you can request that a physical copy be mailed to you by emailing jenny@moebiussyndrome.com.

The cover of the Guide for Healthcare Providers

Medical Travel Reimbursement

The Moebius Syndrome Foundation now offers Medical Travel Reimbursement Program to assist U.S. families and individuals with Moebius syndrome. Traveling to medical appointments or procedures can be costly, and this program allows the reimbursement of up to $2,000 to help offset the financial burden. Thanks to our supporters, members who reside in the United States are eligible to apply and receive medical travel reimbursement up to two times. All applications must be received at least 30 days prior to the medical appointment or procedure.

Medical Travel Reimbursement Now Available
March 2024

The Importance of Rare Disorder Advocacy

A panel discussion of rare conditions: Moebius syndrome, Osteogenesis Imperfecta, Cystic Fibrosis, Cerebral Palsy, and Hydrocephalus with healthcare physicians. Hosted by Greatness Adewumi of Moebius Syndrome Awareness.