Jaye writes:

I suspect  that since Arthrogryposis is a joint issue that there must be 
something going  on with baby's ability to feed (jaw joints) but since I have ZERO 
experience  with this I need input and fast.  Any links to information will 
be  helpful, anyone who has worked with babies with this condition and
can  offer me insights would be very helpful.



Jaye,
 
Probably feeding issues are masked in some babies with this since they are  
most likely bottlefed.I did find an article about a group of individuals  with 
a high percentage of feeding issues due to structural abnormalities of the  
jaw and tongue.  I found some resources for "feeding" but they seemed to  relate 
to later self-feeding independence issues, not early feeding issues. Here  
are a few websites, I have no idea if they are what you need, but a few things I 
 noted in skimming:
: these babies are at high risk for fractures, and need careful handling  due 
to fragility of the bones
: you may be working around lots of splinting 
: these babies and children might be started on OT as early as 2  weeks and 
need a real multidisciplinary approach to increasing range of  motion, and 
later levels of independence. Maybe you could be at an OT session if  this baby is 
having them? 
: some may also have torticollis or scoliosis (which could affect feeding  by 
making positioning a challenge?)
Here are some links I found:
_Occupational Therapy  in the Habilitation of The Child with Arthrogryposis | 
JACPOC Online Library,  1988 | ACPOC - Association.._ 
(http://www.acpoc.org/library/1988_01_001.asp)  
_Arthrogryposis  multiplex congenita; feeding, langu...[Neuropediatrics. 
1990] - PubMed  Result_ 
(http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=2290476&cmd=showdetailview&indexed=google)  
for older kids: _Feeding  and toileting devices for a child with art...[Am J 
Occup Ther. 1979] - PubMed  Result_ 
(http://www.ncbi.nlm.nih.gov/pubmed/506879)  
 
One thing I was thinking reading along is that structural abnormalities of  
the jaw and functional ones of the tongue could also show up as frenulum 
issues,  which only you might notice. One report of undescended testes points to 
other  possible midline issues like torticollis and short or tight frenulums. 
Also  fragile bones may have a different response to the strong tongue muscle 
which  may lead to palate shape issues too? No reports of sensory issues with  
arthrogryposis. 
Just musing...
 
Peace,
Judy



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