Hello everyone - I was wondering if anyone has had the dilemma of deciding what to do about the MMR vaccine. It's just about time for my youngest to receive...
I see the dilemma. I am forbidden to have live vaccinations by my current doctor and that makes sense. However, my first pediatricien gave me the MMR...
Rachel, We did not give Liam (Aidan's little brother) his chicken pox vaccine this year because it is a live vaccine. I do not think we will give him his MMR...
Paul does not receive any vaccinations and in fact I believe his having two of them within a six week period might have been the original trigger for his ...
Hi Rachel, I have a 9 yo daughter w/ Evans.When my toddler turned a year old in May....... I had the same dilemma for MMR and the live chicken pox vaccine for...
Hello, could anyone tell me if they are aware of antihistamines or decongestants effect the plt? Every year at this time my son has the same symptoms he had...
Julie, I just took my daughter Madison to the doctor on Tuesday and we had this exact conversation about the cough medications/decongestants. I strongly...
hi, really, simply, it is that when you have a cold, flu, etc, your immune system gets revved up - natural response. the problem is when you have a blood...
Hello, I've read on this board in the past instances where Evan's patients had enlarged lymph nodes, thought to be malignant, which turned out to be benign....
Susan, Our son, Mark, is now 17. When he was 14, he had a lymph node removed from the groin area. The doctors were certain that it was lymphoma. They were...
OUr Daughter developed inflammed lymph noids in her groin and Lungs.They removed the node in the lungs and groin and determined to be benign. 4 years ago they...
Hi Susan, I've been through the whole "enlarged lymph node" ordeal. After a biopsy when I was 14, they found nothing. I believe the final explanation I got was...
Thanks to all of you who replied to my post regarding my son's enlarged lymph nodes. The responses gave me more hope that this may just be another exacerbation...
SUSAN, MY SON PAUL, NOW 20, JUST WENT THRU THIS SAME THING THIS PAST ARPIL. FIRST HE WAS FOUND TO HAVE A LARGE MASS ON HIS TESTICLE, ALL IN A FEW DAYS TIME ...
My son (15 - Evans since age 4, but now classified as ALPS) has had several PET scans. (Also one lymph node biopsy that was negative.) You are correct,...
I think I am supposed to respond to this message to make sure I am still a member of the Evans Syndrome group. I would still like to be included. Thank you....
I too would still like to be included in the group, I look to stay up to date with others this way, hope that it still happens Betty Mom to Paul 20 Evans+ ...
I also would like to stay abreast of the groups updates. Hope all is well with everyone, Thomas ... From: bettanmic@... To: EvansSyndrome@yahoogroups.com ...
I'm glad to see people posting to the list again. I have been meaning to send an update on my son for some time now, but never seemed to get to it. When I last...
Unfortunately, my dealings with NIH were not as positive... they have NO study available for Evans Syndrome. At separate times, my son had no recordable...
Susan, I am so glad to hear everything came out okay with the Lymph nodes. What a relief for all of you. Since Aidan already was transplanted and hopefully no...
Dear Lou, I hope you are doing well. Micah is currently enrolled in an NIH study. His new doctors in PA are also considering a diagnosis of ALPS. Unphased,...
I too would still like to be included in this group!It is comforting and educational.My daughter is nine and has had this for two years now.She still does well...
I'm glad to be back in the loop. Nick was in crisis in 2001-2002 (Evans and other auto immune issues - including Lupus) and he's doing very well. During that...
Marlene Pritchard
opca@...
Mar 9, 2008 8:08 pm
5024
I understand your frustration. I had contacted the NIH about my son in 2000, 2002 and 2004 in the hopes of getting him him evaluated for ALPS - no luck I had...
Hi Amy, That is wonderful that Aiden's transplant was successful. I have heard the same thing at ITP conferences - most Evan's cases are something else. An...
