Kids with Facial Paralysis ~ Moebius Syndrome

Adults and Children with Congenital Facial Paralysis
or Acquired Facial Paralysis

 Manager ~ Karin Thompson                                                     Australia

  • Moebius Syndrome:

DESCRIPTION

Moebius Syndrome is a rare neurological disorder is congenital and non-progressive. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they are unable to smile, suck, frown, grimace or blink) and the inability   to move their eyes laterally.

Other cranial nerves that may be affected are the 3rd, 4th, 5th, 9th, 10th and 12th.

There may be skeletal involvement causing hand/feet anomalies and/or club foot.

Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, and weakness of upper body strength may also be present.

Some children with Moebius syndrome are also on the autism spectrum

 
SYMPTOMS

The most apparent symptoms are related to facial expressions and function. In newborn infants, the first sign is an impaired ability to suck. Excessive drooling and crossed eyes may be present. In addition, there can be deformities of the tongue and jaw, and even of some limbs, including club foot and missing or webbed fingers. Most children have low muscle tone, particularly of the upper body. CT and MRI of brain may be entirely normal or may show symmetrical punctate calcification and brainstem hypoplasia (1)

 

SYMPTOMS MAY INCLUDE:

  • Lack of facial expression; inability to smile
    Feeding, swallowing and choking problems (sometimes tubes are necessary to thrive; be very careful with solid foods)
    Keeping head back to swallow
    Eye sensitivity due to inability to squint (sunglasses and hats are very helpful)
    Motor delays due to upper body weakness
    Absence of lateral eye movement
    Absence of blinking
    Strabismus (crossed eyes, correctable with surgery)
    Drooling
    High palate
    Short or deformed tongue
    Limited movement of tongue
    Submucous cleft palate
    Teeth problems
    Hearing problems (due to fluid in ears, tubes are sometimes necessary)
    Speech difficulties (especially with closed mouth sounds and sounds involving the lips)
    Minor mid-line anomalies

 Although they crawl and walk later, most children with Moebius Syndrome eventually catch up. Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and lips. As children get older, the lack of facial expression and an inability to smile become the dominant visible symptoms.

Moebius Syndrome is sometimes accompanied by Pierre Robin Syndrome and Poland's Anomaly.

 CAUSE

Children are born with Moebius Syndrome. Although it appears to be genetic, its precise cause remains unknown and the medical literature presents conflicting theories. It affects boys and girls equally, and there appears to be, in some cases, an increased risk of transmitting the disorder from an affected parent to a child. Although no prenatal test for Moebius Syndrome is currently available, individuals may benefit from genetic counseling.

 TREATMENT

Infants sometimes require special bottles or feeding tubes to maintain sufficient nutrition. Strabismus (crossed eyes) is usually correctable with surgery.

Children with Moebius Syndrome can also benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over speaking and eating.

Limb and jaw deformities may often be improved through surgery. In addition, In some cases, nerve and muscle transfers to the corners of the mouth have been performed to provide an ability to smile.

 RESEARCH & AWARENESS

One of the most frustrating aspects of coping with Moebius Syndrome is the surprising lack of awareness among physicians and nurses. It occurs so infrequently that many children go undiagnosed for months and sometimes years after their birth. Parents and those affected spend a lot of time and emotional energy explaining and re-explaining this rare condition.

The rarity of Moebius Syndrome becomes, in effect, an additional complication of the disorder. Because so few members of the professional and lay public have even heard of Moebius Syndrome, medical and social support, as well as reimbursement from insurance companies, are severely limited.

This lack of support services puts additional burdens on individuals and their families in their attempts to cope with Moebius Syndrome.

Lack of awareness also plays a role in limiting research into potential treatments and cures for Moebius Syndrome

Reference: www.moebiussyndrome.com with kind permission from Vicki McCarrol.  

1. CherylAnnePalmer. Moebiussyndrome http:/www.emedicine.com/neuro/topic612.htm

 

 

             Contact:

                              Karin Thompson - Manager

        Julie Cronk - Assistant Manager

Email: karinsthompson@yahoo.com.au

 

Please  feel free to email me any time if you have any questions about the website or need help signing in.

 

 


                                                                                    

 

What is Moebius Syndrome?