Dear Jessica, Dont be worried all will go well. Trust me it is not like other treatmetns you wont even feel like you went to the hospital. I promise there...
Dear Jessica, Don't worry it will all go great! I think I noticed a previous message from you indicating you had concerns about the IV's. I wanted you to...
Just wanted to give an update on alex we went wednesday for a check up and counts and i just found out his counts are still perfect!!!! i just cannot believe...
Mindy, Thanks for sharing the wonderful news. Although we haven't used Rituxan yet because Katie is maintaining adequate counts (not normal though), we...
Hi Jennifer,I just got your reply to my first attempt at emailing.I dont have my own computer,so im using my friends.Forgive me if im wrong,and im sorry if im...
Hi Jennifer,I just got your reply to my first attempt at emailing.I dont have my own computer,so im using my friends.Forgive me if im wrong,and im sorry if im...
Hello again Yes my daughter died as a result of Evans syndrome. It used to be hard to talk about, but as time has gone on talking about her and what a...
Mindy, That's awesome news!! Thanks for much for sharing such good news with all of us! Alex will have a great time with T-Ball, but you'll have even more fun...
Yes, I am worried about the IVs: my veins are collapsing and I look like a druggie from all the bruises. I was able to put my foot down and insist that I am...
Hey Jessica Good for you for putting your foot down but maybe you ought to ask your doctors about a multi port. Our daughter had the same problem, IV's would...
hi all I have started a site http://www.outofstress.com which deals all aspects of stress and relief.This is a place for everyone to get relax.Our stress...
ive got literally no 'game' as they say, haha, so have alot of trouble in the clubs tryin to pickup. im sure there is a few of u'se here just like that. so...
diva-bensley246@...
Mar 23, 2006 3:26 pm
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My 3 yr old son was on orapred for a little over 3 weeks and now cannot walk. This happened once before and his doctor thinks it is joint pain due to the...
Hi, I have had AIHA for past 2.5 years and have been on prednisone (currently 30 mg per day). In my last two CBCs, the plaelet count also dropped from 250...
Hi Ravi, Welcome to the group! Are you also experiencing ITP with the AIHA? Before you go with the splenectomy, I suggest exploring your options with a drug...
Ravi, I don not have any information about docors in your are, but wanted to share that my son Paul who is about to be 19 has has low platelet count for ...
HI Ravi - I have had a splenectomy and it made my counts shoot straight to normal. I was in remission for 5 years before I has another episode, which I just...
Hi Jessica, Thanks for your prompt reply. Did you not go for splenectomy before starting Rituxan? I went to my hematologist today and he is suggesting...
Hi Betty, My hematologist suggested to watch platelet count for now. If it does not fall further (currently at 64K), then it is okay. Thanks Ravi ... wanted to...
Hi Nichole, Thanks for sharing your experience. My hematologist is again recommending splenectomy first and then any other action if necessary. I guess every...
My daughter had the splenectomy and it helped put her into remission for a long time but the down fall we saw and have heard many say is exactly that ...it...
hello Betty, I'm 29, with this problem along w/ alot of other problems...I'm trying to get off steroids, what is your son's platelet count.. Thanks for...
My doctor suggested splenectomy or Rituxan and let me choose. I chose Rituxan first and then splenectomy if that doesn't work. My issue was that I absolutely...
Hi Ravi, Welcome to this group. My daughter also has Evan's Syndrome and we see a doctor at UCSF. Her name is Marion Koerper and she is great. Our next line...
Does anyone have really young children with Evans Syndrome? My daughter was diagnosed at 11 months. She's already been on heavy duty steroids and had 4...
... months old, he is now 5 1/2. He was on steroids for several years until they did not work anymore. We then tried vincristine and cyclosporine together...
Hi Ravi, Just wanted to add my two cents about the prednisone. I was on it for a very long time because I also have asthma and they use it for that too....
Hi, Vikki, How much prednisone were you taking and how long were you on it? My son is taking 10mg every other day, but has been on much higher doses during...
