MORE RESEARCH NEEDED...

...on, well, lots of things related to Moebius Syndrome.  And the good news is, lots of research is being done.

But how about this?  One of the things I hear Moebius moms and dads bring up frequently--and one of the things I even hear persons with Moebius talk about--is the issue of "night terrors."  You know--when a young child with Moebius--and, don't forget, it could also be an adult, too!--has a hard time sleeping.  He or she is subject to horrible dreams.  He screams and thrashes about during the night.  She wakes up terrified and can't get back to sleep.  Sleeping becomes a difficult thing.

Right?  We have all heard of this.  Some of us have been through it ourselves.  But what on earth causes this?  And is there any remedy?  My impression is this:  for some of us with Moebius, we kind of outgrow night terrors as we get older.  For others--they don't completely go away.  But we learn to deal with it and handle it.

But what really is going on with this?  I don't think we know exactly, but it sure would be good to have even more research done and to get this more fully explained.  And if there are in fact solid answers, let's hope they are published soon.  I did just a bit of research myself--and there is this article here, the abstract of which says the article will do the following:

"Sleep–wake problems are common in specific inborn errors of metabolism and structure of the central nervous system. Psychological factors, behavioural difficulties, metabolic disturbances, and widespread rather than focal damage to the nervous system are present in many of these diseases and all influence the sleep–wake cycle. However, a number of conditions cause relatively focal damage to the neuroanatomical substrate of sleeping and waking. These include fatal familial insomnia, with involvement of the prion protein gene on chromosome 20, Norrie disease, the Prader–Willi syndrome and the Moebius syndrome. The last three important conditions, although rare, are considered in detail in this review. They result in sensory deprivation, hypothalamic and mid-brain damage, and involve the X-chromosome, chromosome 15, and chromosome 13, respectively. These conditions cause a wide variety of sleep disturbance, including parasomnias, daytime sleepiness, and a condition like cataplexy. The place of the relevant gene products in normal sleep regulation needs further exploration."

Hmmm, yes...it all needs "further exploration."  Indeed!  Let's hope it happens.  Scientists, go to it!