Hi Orin & Christine,
Thanks for your thoughts..
reading though and going over your responses makes me think...I should
probably be sure I share with an unfamiliar doc some of the points you have
raised
to avoid potential confusion. Amanda has a genetic connective tissue
disorder already causing the osteoporosis and joint hyper mobility. She was
born
with bilateral club feet and has thin skin that tends to form scars even with
minor type injuries. The facial patches were actually beside her mouth not
on her lip or in the mouth( I am familiar with herpes cold sores etc) but
beside and were irregular, round dry scaly ezcema appearing, though never wet
or
oozy(like she had behind the ears..which also lasted for more then amonth or
more) these facial areas were more fine scaley with slight pink under them,
she has had this above one eyebrow as well and on her inner thighs. It
persists for months before finally fading away.
Her GI disorder is an autoimmune allergic type (eosinophilic esophagitis and
gastritis) a response it is thought to unknown food proteins causing
inflamnation, and reflux, she was believed to have celiac and worked up
extensively
for it, endoscope biopsies, blood testing,she is on daily meds to control
the reflux, one which suppresses the acid due to the esophageal damage she had
from acid reflux and avoids certain foods she tells us make her fell ill, and
has fdone pretty well on meds, she had severe failure to thrive and has
gained and grown, albeit slowly since being treated.
My kids unfortunately have a strong preponderance for autoimmune issues in
the family tree..
Paternal grandmom has RA and ulcerative colitis
Their dad has PA and psoriasis
Maternal Granddad has PA and psoriasis
Maternal aunt has RA and mixed connective tissue/lupus like disease

As well as my children have a genetically based, born with, connective
tissue disorder similar to a condition called osteogenisis imperfecta type one,
a
form of brittle bone disease.
Many of the issues were apparent to som extent at birth though it took some
years to figure things out. Frankly I think Amanda has had mild episodes of
psoriasis flares for the last three or four years...my greatest concern is
whether the joint issues she has had for three or more years are PA related. I
would not want her care to be misdirected and issues blamed on the connective
tissue disorder when it actually may be due to an arthritic one.
Thanks again,
LeeAnne


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