Paul, Well chuffed with the news about the wee man, it's about time things started to brighten up, I was chatting to Michelle on i.m. yesterday and she...
According to one study, roughly 1/3 of the Evans cases goes into remission for life. About 1/3 have long term remissions. This info, however, is based one a...
Laura, What treatments were you giving and how were you "weaned" off? Mark Ben's (11 yo with Evans) Dad ... From: Laura Crosby [mailto:usmlaura@...] ...
Paul, I am happy to hear that Nathan's numbers have improved. I hope that you all enjoy this weekend, especially Nathan. I'm sure you will. Take care! Danna...
Paul, We are so happy to hear the news of Nathan. I have been quiet, but keep everyone in our thoughts and read emails daily. Erik is doing well, has had...
Mark, I was given several different treatments...In the beginning I was treated with steroids (lots of them, at the highest point, I was taking 100 mg a day),...
Hello We are still in the hospital with Aidan. It has now been 1 week. After 3 doses of IVIGG and daily oral Prelone and Cyclosporine his platelet levels have...
Boy oh boy, I would love to see these records. They skip the 12 and 15 months because of steroids then give the 18 month's, Wonder if he was still on roids.......
LNAKathy@... wrote: Boy oh boy, I would love to see these records. They skip the 12 and 15 months because of steroids then give the 18 month's, Wonder if...
Amy, I'm glad you found my site. My situation has been so complicated, it's difficult to tell in bits and pieces, and I think it's sometimes more beneficial...
Hello everyone, I have kept fairly quiet with all of you regarding vaccines, but feel that I need to share some information with you now. I know that Evans...
lnalou@...
May 6, 2002 1:13 am
1588
In a message dated 05/03/2002 1:44:13 PM Eastern Daylight Time, ... In a message dated 05/03/2002 4:08:43 PM Eastern Daylight Time, ... Hi Amy, I'm so sorry it...
lnalou@...
May 6, 2002 2:17 am
1589
I've been lurking for a short while on the mailing list and decided to finally introduce myself. My name is Melissa. I am 17 years old. This is my story:...
Melissa-- Yes you truly have a story that sounds awful and my thoughts and prayers are with you. I'm sorry it took so long for them to determine what was the...
dear Melissa, Your path sounds much like my son's. he was 9 at the time and found a huge lump sunder his arm while in the shower. He had the lymphnodes under ...
Hello everyone, I have been lurking out here for a couple months but finally decided to "speak up" to reiterate Lou's message about vaccines. I, too, know ...
Dear all, I have been reading, with interest, the posts about immunizations and swollen glands. At the onset of any auto immune activity (high ANA without any...
Marlene M Pritchard
opca@...
May 6, 2002 5:53 pm
1594
- hello Alex seems t be doing a tad bit better he is still on the dicadron steroid once a day we went in friday and his platlets were at 26,000 now its monday...
Hi Kate, Thank you for responding. I am so sorry to hear about your son. Katie too was on Prednisone for 10 years til we finally said enough. She's now...
lnalou@...
May 6, 2002 8:33 pm
1596
In a message dated 05/06/2002 1:55:10 PM Eastern Daylight Time, opca@... ... Hi again, The swollen gland thing got me thinking about another "disease"...
lnalou@...
May 6, 2002 8:43 pm
1597
Just a note on the vincristine issue: yes, it works for some, and no, it had no effect at all for Ben who went through treatments for almost 2 months - just...
Hi~ It has really been a long time since I wrote. I have been super busy finishing up my second year at USM. This will be the first semester in a long time...
Hi Courtney, Congratulations! It sounds like you are doing wonderfully. I'm so happy to hear that. I do not know of any, but I'm sure that if you call/check...
lnalou@...
May 6, 2002 10:40 pm
1600
Lou, They did have a study going at NIH for ALPS (Autoimmune Lymphoproliferative Syndrome). When I went to the NIH website several studies came up involving...
Lou and all: When I think about Jason, I realized that he had a low platelet count of 59,000 back when he was 5 years old. He had received his vaccinations...
where are you going to school? I currently work/teach at University of Southern MS (USM), so am interested in where you are at. laura usmlaura@... ... ...
My dr at St. Judes in Memphis (Dr. Wang) told my mom that I got Evans from one of two places: a blood transfusion I had when I was 7 due to complications from...
