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.
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...
Hi Rachel! Welcome to this group...I am a fairly new member and check in once in awhile... My son who is 14 1/2, became ill in August 2006. He has hemolytic...
Erin - Thank you for responding, it is much appreciated. I am very sorry to hear about your son. The doctors had my daughter on folic acid shortly after she...
Hi Rachel! Glad to hear back from you... Patrick is on 25 mg of prednisone right now...He is taking 15 mg in the morning and 10 mg late in the afternoon......
PLEASE! Find out about and Let your kids use EMLA before they have to have IV's or blood taken! A lot of doctors won't suggest it, may not even know about...
Hi Erin - I'm happy to hear that your son's numbers are rising. Rhea get very hungry when she is on prednesilone. I think she is constantly eating or saying...
Hi Rachel! Patrick's Hgb was 11.8 today and prednisone is being lowered to 20 mg on Thursday. Drs are running more tests. They are discussing a different...
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...
... 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...
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...
Hi Rachel, I hope the stomach x-ray turns out okay on Rhea. Let us know what the results are. Have you asked her doctor about the possiblity of bacterial...
Amy, We took Rhea in yesterday and of course nothing went smoothly. However we did have a better outcome at the lab. This time I put the EMLA on her arm and...
RACHEL....your Dr. said to use METAMUCUL? That is a laxative ...if diarrhea is a problem....I don't think Metamucil is the answer...plus it is fiber...tht...
Dear Debra: Oh, thank you, I loved your response. I'm Rachel's Mother, Kim. I found this web sight and have paid for one years subscription for Rachel for...
Rachel, WHere do you live? I live in Pensacola Florida and we did not have a good experience with the doctors here. We switched to Shands Hospital in...
SEEING THE POSTS TODAY ABOUT BLOOD DRAWS, YES WE USE THE ELAM TOO, ALSO LIKE EVERYWHERE SOME PEOPLE ARE BETTER DRAWING BLOOD THAN OTHERS, AT THE HOSPITAL ...
Betty - May I ask, how long has your son been on CellCept? Does he complain of any side effects? We were told that there are very minimal to no long term...
Hello Rachel, I have been reading your emails on Rhea and my heart goes out to you. My son Teddy was diagnosed at 15 months and at 3 and a half he ended up...
Hi Rachel..I am Madison's grandmother. I just wanted to let you know that you DO NOT have to use the tegraderm to cover the Emla. The tegraderm can stick so...
Rachel - Thank you so much, I'm happy to hear that your son is doing well. I try to stay positive, but some days are harder than others. Rhea had a really...
Rachel, Paul has had Evans for seven years now . He has tried many treatments but he was on Cellcept for probably 2 years and except for the enlarged nodes ...
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