Hi to everyone, I am new to this group and am looking for other
people to talk to. I have done a little bit of looking through the
questions which have been asked in the past, I can't believe all the
great information from everyone. I am the mother of a 3 1/2 year old
girl who was diagnosed with Evan's at 6 months of age. I am now
trying to understand more of what she is going through. It is
tougher now that she can actually tell you that she isn't feeling
well, but doesn't have the words to really explain. She has gone
through many different treatments and has been in and out of the
hospital. She has developed many adverse reactions to IVIG and
Rituxan, they've told us that she has become refractory to oral
prednesilone (but they give it to her in 5-7 day burst), has been on
6 MP and Vincristine, and now on CellCept since May of 2005. She
battles sever diarrhea for weeks at a time, which I told isn't from
the meds. but sometimes I feel it is or they are contributing to it.
At the present time, she has had diarrhea for 4 weeks, they increased
her CellCept, put her back on Folic Acid, put her on a 10 day burst
of prednesilone, and want her to take Zantac or Prevacid for her
stomach. That is a lot of medicine for such a little person or
anyone for that matter. She also had a port placed in her chest when
she was 9 months old, we were experiencing problems with it earlier
this year and decided to have it taken out. Now she fears having her
labs drawn because she doesn't want any pokies. At time I feel so
helpless and don't know how to comfort her. Lately she has had no
energy to do much of anything, she doesn't sleep well at night and is
constantly complaining that her tummy hurts. Any information would
be great.