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 immunology consult is definitely warranted to rule things out (Dr. B. in Cinci is still offering advice on my son's case via the NIH).
Below is a link to the study my son is in. It does not even mention Evan's or autoimmune cytopenias. I am going to contact the researchers and see if I can get a better description of the type of patients they are looking for. I believe it is possible to participate in this study by just sending them blood samples -a trip to NIH is not always necessary. I'll post more when I get more information.
In a message dated 3/8/2008 12:00:50 P.M. Eastern Daylight Time, smlybly@... writes:
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 longer has the same immune problems, I assume that he would no longer qualify for the NIH study. Although he is still destroying neutrophils, we are praying this will also resolve as his new immune system grows stronger. Is the criteria for the study posted on-line somewhere? If so can you send the link through to the group. I would certainly pass on the information to both Aidan's hematologist and immunologist. At his last hematology appointment, Aidan's doctor told me he "no longer treats evans syndrome as a disease in itself". He said he uses the label "loosely" and since treating Aidan, he has tested the immune systems of all his other evans patients and has diagnosed half with an underlying immune disorder. The other patients he still believes have some other disorder, they just haven't found it yet.
Amy Walsh
mom to Aidan 7 with evans and combined immune deficiency BMT 2007.
could anyone please tell me if they have used imuran. My sons doctor is trying to get us to use it on our son as the rituxin did not work for him. He cannot...
India-I am sorry to hear about your son. I know how hard it is. I have a 5 year old that just finished going through Rituxan. I have never heard of Imuran. How...
Imuran is another immune-suppressant like Prednisone, but people use Imuran for long periods of time than Prednisone. I am 42 and currently undergoing Rituxan....
Lisa, his last rituxan treatment was about 8 months ago and he was ok for about 3 months and that was all he got out of it. his counts were 39,000 on tuesday...
Lisa, My name is Thomas, I'm 44 yrs old. I'm on Imuran and cytoxian and prednisone. We are currently weening me off the prednisone as we speak, I'm down to 4mg...
Dear India, My 13 year old son has ITP, autoimmune neutropenia and is also Coombs positive. He has not had any problems with his red cells yet. Has your child...
Hello Susan, Thank you for responding. My son has gotten some infections from his ANC being low and has to stay in the hospital for at least 3 days when he...
In a message dated 6/30/2006 4:39:04 PM Eastern Standard Time, indiadigi@... writes: could anyone please tell me if they have used imuran. My sons doctor...
Dear India,, There is evidence that long term use of neupogen may trigger leukemia in patients with the congenital forms of neutropenia (Kostmans, etc.) but I...
Aidan was also at NIH...we have recently discovered he has a gene mutation that has caused his immune system problems. All doctors we have seen have said that...
In a message dated 7/7/2006 9:07:02 PM US Eastern Standard Time, ... Hi Amy, I am away on vacation so I don't have the bloodwork with me from the NIH. I know...
Susan, I am afraid I don't really have any good advice...it sounds like we are a bit further down the "road" than you are, but I am afraid it is a long road...
Hi Amy, Thanks for all the information. The study my son was evaluated for is called "Detection and Characterization of Host Defense Defects". It is headed by...
Susan, We are leaving in a few minutes for Cincinnati to see another of Aidan's immunologists, but I wanted to quickly write you back. We are in the same study...
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...
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...
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