Hello there, My 8 year old son named Conner has had Evans for 4 1/2 years now. He actually has had very little treatment compared to others with the disease....
Debbie: Thanks for your response... Excuse any typos-I have been working a lot the past few days and it's catching up with me... My son, Patrick, is currently...
Julie, Paul did not have nay side effects from the cellecept, but did have his blood work checked on a monthly basis. Betty **************Planning your summer...
Hi Erin, I'm glad to hear Patrick's hematologist is monitoring him every two weeks. That's very smart. My main problem has always been the AIHA, but my...
Hi Debbie! Patrick is 15, he has been seeing the hematologist every 2 weeks since last March due the prednisone being lowered very slowly. Patrick seems to be...
Hi, Ern, My son, Nick was 16 when his auto immune adventure began. It's quite a heavy load for an active teenager - they want to be "normal" and know they...
Marlene Pritchard
opca@...
Apr 5, 2008 12:29 pm
5069
Hi Erin, Wow...it sure sounds like you have your hands full at work! Hopefully working for a cardiologist gives you a foot in the door for some good doctors! ...
Hi, everyone! This is the first time that I will post a message here. I guess I am desperately looking for answers. And any suggestions you can offer will be ...
... will be ... flares." This ... had Evans ... here's ... running ... and hgb ... concern we ... the brain ... trying to ... am now ... and I had ... body ......
Hi, Julie! Thanks for the reply. I have tried Cellcept before, but it didn't really work on me. The IVIG has always been helpful to me. I routinely have IVIG...
... IVIG has ... weeks. ... the other ... hemorrhage. All ... plays ... Yes, this ... <EvansSyndrome%40yahoogroups.com>, ... I was ... flawless as we ... of...
Hi Niguel, I'm so sorry to hear about your current struggle! It sounds like the doctors are trying numerous different options. Have you ever undergone...
Hi, Debbie! Thanks. Yes, we are trying to find something that will really work. I have done Rituxan (Rituximab) a few years back. I first had 4 infusions...
Dear Niguel, Sorry to hear of your current severe flare up, my son, Paul who turned 21 last week, had some very low counts in past years and he tried all of...
Hi, Betty! Thanks for the reply. I would very much be interested on any information anyone can give me about using substitute blood. One of my oncologists...
Hi Niguel, Betty has a great memory! Yes, the female (I believe her name is Emily), was given Hemopure. It was approved on a "compassionate use" program...
Hi, Debbie! Thanks for the info. Perhaps I will try retrieving the e-mails sent in the group years ago about the Hemopure. My physicians have never tried it ...
Hi! My name is Bev. I'm 54 and I'm in a flare up now. It was hard to get my counts up this time. My hemo went to 7.4 I've had 2 trasfusions in the last 2...
homesbybev@...
Apr 14, 2008 4:56 pm
5082
Hi, my daughter, Tiffany, is almost 3 and she has been diagnosed with Evans since she was 10 months old. Our doctor has tried steroids, Rituximab, IVIG, and...
DANNY, I THINK EVERYONE WILL RESPOND WITH A DIFFFERENT ANSWER TO THIS ONE, SOME HAVE HAD LUCK WITH THE SPLEENCTOMY , OTHERS HAVE SHORT TIME, SOMETIMES PEOPLE...
Hi Danny, two of my brothers had a spleenectomy, the first one when he was 20 years old, and gave excellent results, he had no more problems after that...
Hi Danny, I'm sorry to hear about Tiffany's stuggles with this darn illness! Especially since she is so young! Like everything else with this illness, what...
Hi All My wife went in for a spleenectomy yesterday morning, we saw our consultants on 28/4/08 they wanted her to go in on friday 2nd of May but as we had...
Hi, I pray everyone is healthy and in remission.... and I pray everyone's treatment works for them. My son (Nick-26) had the spleen removed last year. As...
Hi, I have a son with Evans Syndrome. He is 26 now, the drs that i took him too advised me against that surgery. But what do you do , its all such a guessing...
Yes I do agree these children are so special but alas I must also state that when they go home to heaven it's a special grief one that so hard to fathom so...
Hi All, I watch this group and pray for all of the members as we deal with the problems of Evans Syndrome on a daily basis. I have lived with Evans Syndrome my...
