Thank you all so much for your emails it really helped.
I am so glad i found this group i really need some support
right now. I was wondering how i can receive that list of
physicians? I do believe i have a good team of doctors
but i just wonder sometimes if he has the best? Im having
such a hard time giving him the prendesone it tastes so bad
i have to force it down him!! Any suggestions?
Well i think they are only going to keep it up another week
it hasent helped the platlets at all.
Alex has had 2 blood transfusions when his hemoglobin was
critical what do you think of that procedure?
We go for counts in two days but i can already tell by all
his new bruises his counts are not up.
Thank you all so much for your emails it really helped. I am so glad i found this group i really need some support right now. I was wondering how i can...
Mindy, This group has been a life saver for most of us, I think. I'm Emily, I was diagnosed with Evans when I was 21, and I'm 24 now, and pregnant, and still...
Emily, How's the pregnancy going? I think of you and pray for you often. Marlene On Tue, 02 Apr 2002 00:14:55 -0800 "Emily Gruszka" ... ...
Marlene Pritchard
opca@...
Apr 2, 2002 12:47 pm
Dear Mindy, This site is of great help to many of us , both for support , information and sometimes the need to unload. As the mother of a child who has had a...
Marlene, So far so good...I have had a really easy pregnancy. I'm at about 6 months, and the baby is in the 70th percentile. I'm feeling fine, and I started...
Hi everyone thank you for all the emails!! It really helps. Alex is doing okay he still has a viral infection We will find out his counts on Wednesday he has a...
Mindy, I know you've had a lot of responses and support from the group (including Shari who's my wife). I'll throw in my 2 bits. We were exactly where you are ...
It would appear Nathan (my seven year old son) is going through a similar experience to Alex just now. His platelets were 22 this morning, with haemoglobin at...
Dear Paul, You often have given me words of encouragement, so I will send you a big hug today too, you could use it, hope things get better soon. betty ( Mom...
Hi Paul, It bothers me so much to think of little Nathan dealing with all these issues. I'm sorry to hear his counts have dropped. I know how fatigued and ...
Hi Mindy & other new members, I've been reading the emails from you and several other new members in the group. I'm deeply saddened to add such young precious...
Paul, As I recall...(and I could be wrong, it's been a while:)...the Coombs test is a test of the antibodies, to see what levels of antibodies (microscopic, ...
Paul, I am so sorry to hear about the rough time you are having. I hope things have eased up a bit at this time. As far as Coombs is concerned, I know that a...
Mindy, You asked about disability...I've been on disability for the last 3 years or so. I became eligable shortly before being released from the hospital ( I...
Hello everyone this is Mindy mom to Alex 4 year old with Evans i havent been on for awhile since we were in the hospital after Alex's evans took a different...
Hi Mindy: My daughter, Danielle, has been treated with both vincristine and cyclosporine. Dani stopped responding to vincristine so they then put her on...
thank you for your response!! i was wondering how long your daughter was on vincristine and how long on the cyclosporine and did she take them together?? \\ ...
Hi Mindy: Danielle was on vincristine for about 10 months until it just stopped working for her. At that point we went to see an immunologist and she put Dani...
I have a question for the group regarding Mono. Danielle's spleen became enourmously enlarged over the past 3 days, essentially consuming her entire lower...
Hi Robin, My name is jean my daughter nikita has had evans and ITP for almost 3 years now, During the past Holiday she had a bout and it was stated that it was...
Robin, My father 83 has Evans, I have Rheumatoid Arthritis(In remission with medicines). In the spring of 2002 at age 55, I had mono. I was feeling really...
thank you for the replys to my email on cyclosporine and Alex. Well Alex is now off all meds it is the first time in 4 years they stopped the cyclosporine on...
Mindy, Aidan started with frequent (chronic) coughing about 2 years ago. The hemoc always said it was viral, until last year when he had a particularly bad...
... alot alike i remember when you first joined and i noticed alot the same icluding their age. Alex has been off the cyclosporine for a week now we went in...
Oh yes, I think al of us have infections. I have cold's al the time and often bronciatis. And sometimes lunginfections. But the doctors have done their job...
Erik Hovingh
erikhovingh@...
Jun 6, 2005 8:20 pm
The doctors think that i may have common variable immune deficiency and evans, the cvid would be what is causing the coughing. Greetings Erik ... From: Amy...
Erik Hovingh
erikhovingh@...
Jun 8, 2005 7:47 pm
Erik, The doctor thought Aidan had CVID, also. He responded to vaccinations however, so they have ruled it out for now. Immunologist did say he still might...
Hello Amy, I'm getting imuglobuline true infusion, this is what you call IVIG i think. I have had this every month during the last 7 years. the last year i've...
Erik Hovingh
erikhovingh@...
Jun 9, 2005 6:54 pm
Hi Erik,my name is COurtney, I am a very sporadic poster on this group so you will have to forgive me if i ask you something you have already told everyone...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
Offline 
Send Email