Have not talked on the site for a long time but have been following faithfully for many years. My son Bill had ITP which displayed as bruises around his waist...
I found this abstract. Does anyone by any chance have access to the full article? It is from the Clinical Immunology Journal. Amy mom to Aidan 6 with Evans...
hello everyone just an update on alex. His white cells are up!!! 4.6 and his red is 11.1 so he is back at school!!! we are so happy and we are formally...
Has anyone ever been to any of the well known major hospitals such as St.Judes,Mayo etc. for information or treatment of I.T.P. or Evans? We have been at same...
we tried the national institute of health (NIH) and st judes. neither wanted any part of us. apparently there is not enough $$$ to interest them. hope it...
Julie, Aidan has been to NIH. However, in order to be seen there you need to be involved in one of their studies. Aidan was/is in a study for diagnosis of...
Dear Evans Family, It has been a while since I have posted, although I read all the postings and think of all of you frequently. Back in 1995, when Micah...
ben has been a patient of dr bussell as a consultant since his diagnosis in '01. we have also taken ben to dr neufeld at bostons childrens hospital. he is...
Shelly, I am glad to hear Micah has consulted an immunologist. How old is Micah now? I take it from your message that he is now in control of his own health...
Thank you so much for your responses I am going to check into the other Doctors mentioned.We are presently seen at the Children's Hospital of Detroit.[ we are...
Shelly, Michah is very similar to my 15 year old son. My son's platelets and neutrophils are affected, and he is coombs positive. He has had many immune ...
Over the years I have been in this group I have noticed that the teen years are often crisis years for patients with Evans type syndromes. Now that my son is...
Julie, My daugher Madison is 7 years old and she goes to Shand's hospital in Gainesville, Florida. We have never been to St. Judes but our doctor has contacted...
Susan, My daughter is not a teen, she is only 7 but I can remember when we found out that she was negative for Lupus, the immunologist told us that if she did...
I went to Mayo clinic. I asked to be referred by my local hematologist for a second opinion before my spleen was removed. They questioned my diagnosis - my...
Brenda, thank you for the uplifting message... I am a nervous wreck wondering if my son's spleen(s), (there were two)... removal would be a long lasting...
btw, we go to the UPMC (University of Pittsburgh Medical Center) hospitals and doctors, which includes the Hillman Cancer Center and other UPMC Cancer Centers...
Susan, Paul had far more serious platelet crashes when he was younger ( now 20) , and more nose bleeds and bruising, he is off all meds now and hasn't had an...
... ( now 20) ... hasn't had ... 50,000. he ... take each ... best to all ... 50,000 he had IVIG last week they had dropped to 7,000. went up to 180,000 then...
Please remember that most doctors give zero credence to the chlorine trigger for Evans. Our son got sick spring and fall like clockwork, until an infusion four...
Sorry, it was IVIG. ... From: Matthew Berlin To: EvansSyndrome@yahoogroups.com Sent: Monday, November 26, 2007 12:38 PM Subject: [EvansSyndrome] infusion The...
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...
