Hi Everyone, I was doing some searching for something for a member tonight, and came across these sites that had some really good information...when you get a ...
lnalou@...
Feb 5, 2003 1:57 am
2068
Hi everyone! This is Alex's mom I haven't been around for a while my computer has been out of commission. I am Mindy the mom to Alex he is 2 1/2 with evan's....
In a message dated 2/6/03 7:54:29 PM Eastern Standard Time, mvaa1@... ... Hi Mindy, Welcome back! You are totally right to be fearful of vaccines for...
lnalou@...
Feb 7, 2003 2:04 am
2070
I hope everyone is doing fine. I just wanted to give you'll an update on Carlos my 4yr. old with Evans. He was diagnosed with ADHD on Wednesday and started his...
rcavazos161251@...
Feb 7, 2003 11:04 pm
2071
Hi Everyone, I found the following article interesting. Note that it is in regards to congenital hemolytic anemia and not autoimmune, but still find it...
lnalou@...
Feb 12, 2003 3:27 pm
2072
THINGS YOU SHOULD KNOW ABOUT SMALLPOX VACCINE In these volatile times, it is sometimes difficult to know the best course of action. Here's some information...
lnalou@...
Feb 18, 2003 6:19 pm
2073
Hello everyone- Aidan's wbc(1.5) and ANC(270) were low again at his appointment on Thursday. The doctor is taking no action, just warned us against watching...
In a message dated 2/22/03 3:37:16 PM Eastern Standard Time, ... It has been my experience with Katie that the WBC's do not respond as well to treatment....
lnalou@...
Feb 23, 2003 8:48 pm
2075
just want everyone to know that after mike receiving 4 treatments of rituxin, his platelets are at 375,000!!! the highest they have ever been since he was...
In a message dated 2/23/03 7:30:54 PM Eastern Standard Time, ... Congratulations...excellent news all around! Wishing you the best of luck. Lou Lou Addington,...
lnalou@...
Feb 24, 2003 1:22 am
2077
Kim, This is great news for Mike, and for the both of you also. I pray for continued recovery of good health. I do have one question: Did he only receive 4...
Jeff Ash
jeffery_1977@...
Feb 24, 2003 12:30 pm
2078
Yeah and congratulations Kim and Mike. We wish you the best and hope all continues to go well! Take Care and keep us posted. Heather (son Erik 7 w/Evans) ...
Kim, Thanks for all of the good news !!! My son is due to start the rituxin in two weeks or so and I was encouraged by your good news , and good luck with all...
Jeff- Mike only had 4 treatments and then stopped. they are checking his counts weekly and will check them again wednesday and if they see them drop again...
Hello, My name is Eva Darias. I live in Spain. This is the first time I write. In my family there are three people with Evan Syndrome. One of those died asome...
In a message dated 2/25/03 8:52:39 PM Eastern Standard Time, ... Dear Eva, Welcome to the group and I'm so sorry to hear of your family's experiences with...
lnalou@...
Feb 26, 2003 3:30 pm
2083
Dear Lou, Thanks for your answer. My brothers, cousins and I wanted to know if when we have a child, he/she could hae this syndrome, but I'm afraid we have no...
In a message dated 2/26/03 11:15:36 AM Eastern Standard Time, ... You are right, we don't have those answers. I do know of many many families where only one...
lnalou@...
Feb 26, 2003 4:24 pm
2085
Just this week our doctor who is treating our daughter Rachel informed us that he wanted Rachel to see a Doctor at Cornell University about her having Evans...
Just this week our doctor who is treating our daughter Rachel informed us that he wanted Rachel to see a Doctor at Cornell University about her having Evans...
Dear Nancy and Randy, This is the first mention I have heard of anyone with a transplant, so there's nothing I can add on that topic. There is, however, lots...
punstoys@...
Mar 1, 2003 5:03 am
2088
Hi Shelly, The Doctor which they want Rachel to see is Dr. Busell. I tried to look up info on him on the Cornell web site but there wasn't too much. We live...
Dear Nancy and Randy, It was my son, Micah, who was seen by Dr. Gill (now retired, much to my dismay) and Dr. Busell. When his platelets crashed (below...
punstoys@...
Mar 1, 2003 4:28 pm
2091
We notice in the e-mails that Evans people should avoid tomatoes and onions. What is the significance? Our grand-daughter has Evans....
In a message dated 3/11/03 8:43:17 PM Eastern Standard Time, ... Hi there, Some people have found in their research, that tomatoes and onions can exacerbate...
lnalou@...
Mar 12, 2003 2:00 am
2093
yeah I noticed that too. I would love to be eating the right foods to keep me healthy. Does anyone know of other foods people who have compromised immune...
I just want to share my story and I hope this may help although may be a little bit. I got Evans on 1998 after took rheumatic pills. HB going down to 6,...
Hello there, Can you explain what Tahitian noni is, and why you think it helps. Greetings Erik ... ...
Erik Hovingh
erikhovingh@...
Mar 14, 2003 5:35 pm
2096
Greetings Erik, Tahitian Noni is come from a fruit call as Noni (morinda citrifolia) in our country (Indonesia) we call it mengkudu. It's very stink, but after...
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