RETURN TO INDEX
WHAT IS MOEBIUS SYNDROME ? |
DESCRIPTION |
DESCRIPTION Moebius Syndrome is a very rare disorder characterized by lifetime facial paralysis. People with Moebius Syndrome can not smile or frown. In many cases, they can not blink and have no lateral eye movement. The syndrome can also be associated with physical problems in other parts of the body.
The sixth and seventh cranial nerves are not fully developed, resulting in
eye muscle and facial paralysis. Movements of the face such as blinking,
lateral eye movements, and facial expressions are controlled by these nerves.
Many of the other may also be affected. |
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.
Symptoms May Include: Although they crawl and walk later, most Moebius Syndrome children 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 it. 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 (ie ) 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 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. The Moebius1.org site cannot change this situation over night. But, with your help we can begin to take the actions that produce a quality resource and support center here on the Internet. Nothing is more frustrating than to need information for your child and find little or nothing available. Please take the time to participate in the various sections of this site as you feel comfortable.
The documentation of experiences and feelings is very helpful to those families
new to Moebius Syndrome....if you can, submit something to the Parent's Guide
& Owner's Manual. |
HABERMANN FEEDER In some cases of severe feeding problems, such as those caused by Pierre Robin Syndrome or Moebius Syndrome, the Haberman Feeder offers an alternative to enlarged and/or extra holes in the nipple and nasogastric tubes. Invented by the mother of a little girl with Pierre Robin Syndrome, the nipple rewards even the slightest effort from the baby's tongue or gums. If the baby cannot nurse at all, one can squeeze and release a limited volume of milk from the reservoir into the baby's mouth.
To order the Haberman Feeder call: 1-800-435-8316 or FAX 815-363-1246. |
12 CRANIAL NERVES
1st = Olfactory nerve - relays smell |