Lisa -

Rhea, my daughter, was on 6MP for about 15 1/2 months.  It seemed to work good in the beginning and then the docs. weren't getting the results they wanted so they tried Vincristine, which didn't work either.  Rhea ended up in the hospital again.  It has definitely been a long road of hospital stays and trying new meds.  When they put her on CellCept, it was great.  Rhea had no allergic reaction to it and there doesn't seem to be any horrible side effects.  They started her on CellCept in May of 2005 and is still on it to this day.  For about 1 year she was on just the CellCept and Zantac for her tummy.  I think that twice she needed to be on prednesilone for about 5-7 days just to get her numbers up.  Now she has been on the pred. for about 15 days and her numbers aren't coming up like they want them to.  We have a check-up this afternoon.  They will draw lab work and do a x-ray of her stomach to see if there is any bowl obstruction.  She is in so much pain, it just seems to be getting worse, I hope they figure something out.  It breaks my heart to tell her that I can't do anything for her.

 

We have used EMLA from the beginning, it's great.  She doesn't like the tagaderm being pulled off her arm.  Although I can't blame her.  Hope for the best, I'll let you know how it goes.

 

Have a great day and talk to you soon,

 

Rachel Warner

Mom to Rhea (3 1/2) - Evan's Syndrome

lisa heisterman <lmshoenfelt@yahoo.com> wrote:

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@yahoo.com> 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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Rachel Warner

Mom of Rhea (3 1/2) - Evan's Syndrome

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