Hi. I will be taking my son to an immunologist on Tuesday. This part of my sons illness is new to me. What are some questions I should be asking? I have been...
Hi all, The group has been quiet lately. I hope everyone is doing well. Aidan is doing really well. His bone marrow transplant was over one year ago, it...
interesting...thank you for sharing Erin Amy Walsh <smlybly@...> wrote: Hi all, The group has been quiet lately. I hope everyone is doing well. Aidan...
Hi Amy. I would have loved to have been there. I really need to educate myself more on this topic. There is so much to learn. I just want to be able to...
Thanks Amy, I find this very interesting. I'm glad to hear that Aidan is doing well after his BMT. I am a Evans's patient and have not been to a immunologist...
thanks for the information, yes the group does seem quiet lately, Paul is now 21, he was 12 when we first joined, he is doing well from with his Evans, he has...
Hi Amy, Thank you for sharing.That is very helpful!Rebekah has been doing well since February...we are hoping it stays that way, once cold season hits:)I am...
I was curious what others thought about immunization and banking cord blood. I am pregnant and due in April and I think I should hold off on immunizations for...
Lisa, Congratulations on your pregnancy! Aidan is the oldest of my three children. We paid $1200 to have our second child's cord blood banked with a private...
i am glad everyone is doing relatively well. ben, now a seior in high school, is doing very well. he is on the max adult dose of cellcept and that is...
Hello, could anyone tell me if they have had any lung issues related to evans my son is going through testing in regards to nodules found on ct scan we will be...
Julie, My son Paul has had some minor lung infections with Evans usually cleared up with fairly easily with antibiotics, however I did see an article today ...
In a message dated 9/5/2008 9:36:11 A.M. Eastern Daylight Time, jakk5858@... writes: Hello, could anyone tell me if they have had any lung issues related...
Hi Amy, Thanks for the update. It is wonderful to hear how well Aidan is doing. Who was the doctor that spoke? I definitely need to look into meetings here in...
Susan,  Thanks for sharing the information about the NIH study! How exciting! I hope more evans patients will get involved. I know we had an excellent...
hi folks I have been quiet for a long time but still read all the emails with interest. Nathan is now 13 and he's turning into a young man. We stay in...
Paul,  I am so sorry about Nathan's relapse. It makes me sick to think how quickly one can go from healthy to sick with this awful disease. Katie really...
Hi Paul, My name is Lisa and my daughter Madsion is 8 years old and was diagnosed with Evan's Syndrome a little over 3 years ago. She has had many ups and down...
... stay in Scotland, ... 2001. He's ... and today ... fridge lock ... ago ... swimming his ... and he ... emails about ... the ... Hello Paul, I totally...
Paul, Just to give you another perspective, my son usually does better in the summer even though he is swimming in public pools and freshwater lakes. I don't ...
Paul, I am sorry for your son's relapse.When my daughter came down w/ this 2 years ago at age 7...we had been swimming in a public pool once a week.We have not...
I always wondered about pools with my son Patrick... The last two August's, he jumped in the pool when water was getting chilly...his counts dropped... I...
My brother Arnau, now 30 years old, dropps everytime he overexercise, when he walks, runs, plays any sports too much. Besides that for the last two years he...
Hello Everyone, I read the posts but think I have only posted once a very long time ago. I do not have Evans but Hemolytic Anemia. This subject is very...
Lisa: What medication are you taking to treat the hemolytic anemia? My son became very ill in August 2006 and 2007... He is now on Imuran and this August his...
Dear Paul, This is Paul's mom Betty, I do remember both of you, my Paul is now 21 and had one IVIG treatment this year his platelets get tested every 6 - 8 ...
Erin, At the present I am not taking anything for the Hemolytic Anemia. I just talked the doctors out of prednisone when I was in the hospital a few weeks...
Lisa: The Drs have never referred to illness as warm or cold...I assumed it was cold because they caution us against extreme cold temps... I asked our Drs...
I can't remember Erin the dosage I was on........it's been since 2005. I don't remember having any side effects only that it is important that you remember...
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