--- In EvansSyndrome@yahoogroups.com, lisa heisterman
<lmshoenfelt@...> wrote:
>what is 6mp?
> Rachel,
> My little girl Madison is 7 years old and was diagnosed with
Evan's when she was almost 5 years old. She has had normal counts now
for about 4 months after being on 6mp. I am sorry to hear that it did
not work for your daughter. How long was she on the 6mp? My daughter
also had reactions to the IVIG and Rituxan and the Prednisone stopped
working on her.
> Madison also had horrible problems with her stomach while she was
on all the meds. I kow how horrible it is to see your child suffer.
For months, my daughter just layed on my lap and cried that she hurt.
She was so miserable and had no energy to do anything. You just have
to keep your faith and know that things will get better, maybe when
you least expect it. Madison's platelets had dropped to 1,000 last
summer and the doctors could not fix it. They were going to remove
her spleen but I insisted we try the 6mp first. It was like magic.
Just hang in there and try to look forward to when she will be
better. Kids have such a better chance at fighting this. I know how
fusterating is is, just palying the waiting game and trying
everything you can to make her feel better. I saw also that my mom
wrote to you about the Emela. It works really good. I never allow
Madison to be stuck without it. Best of luck to you! Lisa
>
> Rachel <r_rwarner@...> wrote:
> 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.
>
>
>
>
>
>
> LISA
>
>
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