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...
Im sure that many of you have done research and come across Dr. Neufeld's name. For those of you who dont know, he is an ITP specialist in Boston. I wrote to...
we took our son to see dr neufeld last spring when his platelet count was sub 10k for over 3 months and nothing was helping. he recommended rituxan (and is a ...
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...
We too have seen Dr. Neufeld, and Paul's hematologist works with him. When we first met him we were a little overwhelmed, probably not by him just the whole...
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...
where is dr neufeld located? we have a wonderful hem/oc that my hubby sees but we are pretty much at a last straw with treatments for him. his counts were at...
Kim-Im glad that this info is able to help you. I was hoping that by posting this, someone could use it. His name is Dr. Neufeld. He is located in Boston. Im...
boston children's hospital ... __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection...
Kim, He is located at Childrens Hospital in Boston,he is the director of Clinical Hematology I believe the office number is 1-617-355-7700, maybe they could...
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...
Lisa, I'm sorry that I did not respond sooner but life got the best of me and I have been off of the computer for the past week. I am thrilled that Madison's...
Lou-THank you so much for your encouragment. Unfortunatelly, Madison's platelets were back down to 4,000 3 days later(this monday). I am taking her tomorrow to...
Hi Susan, Thank you for responding and I apologize for my tardiness in writing back. Sometimes I need to just stay away from Evans syndrome to give myself a...
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...
... With no active bleeding or problems i would have to wait on the surgery our doctors always say that he treats the child not the disease even with the...
Just wanted to let all of you knwo that Madison's platelets are now at 11,000. They were 4,000 on Monday so I am very happy with that. I am hoping that they...
I will pray very hard over the weekend, for all of you. Try to hold off if that is what you think is the right thing to do. Betty Mom to Paul ( 19 with Evans...
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...
Im curious if anyone has seen an increase in platelets after their line was pulled. I flush Madison's line every day with heprin but I know that can make your...
my husband has a line in his neck and it has heprin in it. he got a blood clot from the line in his groin and they put him on lovanox and then coumadin. his...
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...
I found the recent post about T-cells vry interesting, when Paul had his first heart repair at the age of one, we were told that he did not have a thamus gland...
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...
Just wanted to let you know that my father passed away June 15. He has had Evans for seven years. He turned 85 in Mar 2006. He had Congestive Heart Failure...
Madison's platelet counts were back down to 6,000 yesterday. We are still trying to avoid spenectomy. Her doctor e-mailed me last night that we may try Imuran...
my husband is on imuran but our dr told us that it will take up to 2-3 mths to kick in. he was on it also when he was 17 yrs old along with high doses of...
