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Date: | Wed, 5 Mar 2008 13:39:24 EST |
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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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