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Ceianne is 3 years old and was diagnosed with a disease called 'Erythromelalgia' in October 2006. Erythromelalgia
(or EM) is a neurovascular disease that is irritated by a number of things....stress, over activity/stimulation, certain medications,
even the weather. It has been found that the factor that most irritates Ceianne is the weather. On days the temps rise over
75 degrees she has episodes from her EM. EM episodes consist of extreme heat and pain in the extremities and face (EM can
affect throughout the body but right now these are the only areas that affect Ceianne). The pain becomes so intense that she
will scream in pain until it can be controlled. Right now the only way to calm these episodes is the use of Motrin therapy
(she is given a dose of Motrin and usually within 15 minutes to 1 hour she is back to normal temperature and the pain subsides).
Wearing socks, shoes and sometimes clothes irritate Ceianne as well! Her skin is very sensitive (she also suffers from keratosis
pilaris) on her legs and arms! On days that the temps reach over 75 degrees Ceianne has episodes to some degree almost daily!
Some days the episodes are as simple as her having warmth in ther hands, feet and face, her becoming extremely irriatated
and just cry for hours, for no apparant reason. While on other days she has full blown episodes where her hands, feet and
face become extremely hot to the touch (and red) and she will scream until we can get the Motrin to take effect! The length
of time it takes to get Ceianne's episodes under control is of much concern right now. The family has already been told that
there is a great possibility that at some point the Motrin therapy will no longer work. There is only one clinic in the US
that is set up to deal with Erythromelalgia....the Mayo Clinic located in Rochester, Minnesota. It's by a strange stroke of
luck that this is the same clinic that has also agreed to see Ceianne's sister (Annika). At this particular clinic they will
be able to test and treat Ceianne's condition (to some degree). Because of her age her case is made that much more difficult....normally
EM is only seen in adults, so prescribing medications known to help this condition become much more difficult! The care Ceianne
would need at this clinic has also been denied 'in network' coverage by the family insurance so the family is faced with bearing
the costs alone (along with transportation and co-payment costs).
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