There is no definitive treatment available for Moebius syndrome. All cases are different and it is important to surround yourself with a good medical team, which may include a mix of the following:
Occupational and physical therapists
Surgical care may be an option to treat symptoms of Moebius syndrome but are not a cure. Examples of surgical procedures:
- Strabismus (crossed eyes) may be improved with surgery.
- Eyelid surgery for epicanthal folds, and eyelid surgery or gold weights to protect the cornea.
- Scleral lenses: Large gas permeable contact lenses
- Clubfoot occurs in almost one-third of patients. In most cases, the deformity can be corrected partially or entirely by means of orthopedic procedures. Find out more about these treatment options
- Ponseti Method: The majority of clubfeet can be corrected in infancy in about six to eight weeks with the proper gentle manipulations and plaster casts. The treatment is based on a sound understanding of the functional anatomy of the foot and of the biological response of muscles, ligaments and bone to corrective position changes gradually obtained by manipulation and casting. (courtesy of Ponseti International).
- Underdevelopment of hand or fingers, or webbing of the fingers (syndactyly) – surgery often can be performed to separate fingers.
- Surgery to the mouth to provide support, assist with speech, and create a symmetrical smile.
Watch this video to learn more about “Smile Surgery”.
- Airway functions commonly are compromised. Tracheotomy may be required to support the airway. Find out more (courtesy of the Mayo Clinic).
Webinars of interest to people with Moebius syndrome are now online for viewing:
Congenital Facial Paralysis by Bryn Webb MD
Facial Neuromuscular Retaining by Jacqueline Diels OT
Facial Paralysis by Andre Panossian MD
Safe Feeding & Speech Clarity by Sara Rosenfeld-Johnson MS, CCC-SLP
Improving Feeding Safety and Speech Clarity in Clients with Moebius Syndrome
by Sara Rosenfeld-Johnson, M.S., CCC/SLP
Over the past seven years I have worked with eleven children diagnosed with Moebius syndrome. In each case, there has been improvement in the function of the affected oral musculature. The success rate is based on one critical diagnostic piece of information: are the affected muscles paralyzed or is there paresis?
Paralysis is defined as: Complete loss of motor function, including loss of sensation. Paresis is defined as: Partial paralysis affecting muscular motion but not sensation. In the case of paralysis, the goal of oral-motor therapy is to teach the surrounding muscles to compensate for the muscle that cannot move independently. In the case of paresis, the goal of oral-motor therapy is to improve the functioning of the affected muscles.
Oral-motor therapy is a new area of intervention that is only beginning to gain the respect of the medical field. Prior to this type of therapy, clients with Moebius syndrome were taught compensatory strategies to improve functioning in feeding and speech clarity. With the introduction of oral-motor therapy, however, our goals have changed dramatically. We now work towards the goal of “normal movement” in feeding and in speech clarity.
Once the diagnosis of paresis has been confirmed, direct work on improving mobility in the muscle can be initiated. This diagnosis is generally made by a physician. Prior to the medical diagnosis, however, an informal test can be given by the lay person if paresis is suspected. Place a non-flavoured toothette that has been slightly dampened in a lollipop vibrator. Place the toothette on the inside surface of the upper lip beginning right above the canine tooth. Depress the vibrator button as you gently move the toothette along the inside of the upper lip. Work across midline to the opposite side of the mouth, ending at the canine tooth. Immediately reverse the direction of the stimulation. Continue in this manner for on to two minutes. Remove the toothette and watch for any client response. The response may be at the muscle level in the form of minimal movement, or it may be a verbal statement that the client feels something. Since sensation is not present in a paralyzed muscle, any response to the toothette vibration will indicate that paresis, not paralysis, is present. This informal diagnostic technique can be used to evaluate the status of the tongue as well. Referral to the client’s physician for medical confirmation should then be recommended.
A variety of oral-motor exercises have been used with this population. The most successful are those that first address the awareness or “sensory” level of the muscle and then continue to work on movement in that muscle. For example, a series of increasingly difficult-to-blow toy horns has been used to improve the mobility and strength in the upper lip. The “Horn Hierarchy” works on improving abdominal muscle grading, velo-pharyngeal functioning, jaw, lip and tongue dissociation. There are fourteen horns in the hierarchy. Each one also addresses the development of specific speech sounds.
Improving upper lip mobility is a primary goal for clients with Moebius syndrome. The inability to close or round the lips affects feeding safety as well as speech clarity. In the area of feeding, the lips are used to : breast feed, drink from a bottle, drink from a cup, remove purees from a spoon, retract food back over the tongue to initiate a safe swallow, drink from a straw and control saliva (i.e., drooling). Without this ability to create a vacuum in the oral cavity, feeding can be “messy,” and the client may also be placed at high risk for choking and/or gagging. In clients over the age of twelve months, the initial goal is generally lip closure. In addition to horns, a series of graduated lip closure exercisers has been used successfully. Once lip closure has been achieved, the “Straw Hierarchy” can be introduced. This sequence of eleven progressively more difficult straws is used to teach the coordination necessary for safe swallowing and to improve jaw stability, lip rounding and tongue retraction. Oral-motor/feeding therapy has been used effectively for improving lip closure and lip rounding as a means of improving feeding skill levels and feeding safety.’
In the area of speech clarity, the lips are used for the following speech sounds:
- Closed Lips: /m/ , /b/ , /p/.
- Rounded Lips: /sh/, /ch/,/j/. Lower Lip Tension: /f/ , /v/, the vocalic /r/.
- Rounded Lips: /oo/ (“too”), /oo/ (“good”), /aw/, Retracted Lips: /ee/, /ih/, /eh/.
- Diphthongs: /I/, /a/ (“bake”), /o/ (“no”)
Many clients with Moebius syndrome have intact or close to normal language systems. In other words, they are able to understand and to use vocabulary and sentence structure at their chronological age level. Unfortunately, many of these same clients cannot make themselves understood; their speech clarity is poor. Insufficient lip mobility is a major causative factor. Oral-motor/feeding therapy has been used effectively for improving lip closure and lip rounding as a means of improving speech clarity.
Copyright © 1999 Sara Rosenfeld-Johnson, M.S., CCC-SLP
Speech-Language Pathologist, www.talktoolstm.com
Used with permission – Moebius Syndrome Foundation – 2002