Hi everyone I am updating on alex. Im worried and taking him in today for counts he is not due for another week but his lips look pale to me! I feel so sick...
Mindy, We will be praying for Alex today. Please let us know as soon as you have the results. Grace (Katie 14 with Evans) aamom4ever <aamom4ever@...>...
Mindy, Im so sorry to hear that Alex has to go back. I hope that his counts are ok. Please let me know when you find out. I convinced Madison's doctor not to...
Well my instinct was right! His hemoglobin is at 7! They started him on steroids again i never wanted steroids back in our lives but i dont have alot of choice...
HI Mindy, I'm so sorry that Alex is back on steroids. I know how I dread that happening to Katie. Alex's symptoms were probably not a virus, but were a...
Mindy, We will keep Alex in our thoughts and prayers. Erik too experienced a fever and vomiting when his platelets dropped. Please keep us posted on how he...
well we are in the hospital we came in yesterday the steroids didnt not help at all and he dropped to 4.9. they gave him ivigg last night and now he is getting...
Mindy, I know that you must be so frightened. I will keep your family in my prayers. Please remember to take care of yourself. You have a network of people who...
hi all. mindy, i know you are scared and i can concur. i don't understand why they would give blood though - his immune system will destroy it and put a...
Mindy, We are so sorry to hear the news, our family will keep you, your family and Alex in our prayers. Hang in there and be strong for Alex, you are not ...
Mindy, I am so sorry to hear that Alex is back in the hospital. Im sure it must be so hard. Madison has never gone into remission so I can't imagine the...
Hello everyone, I am the parent of three children with Evans'..two are grown and in remission, but, my daughter passed away 5 years ago with NHL and malignant...
Alvis Zujevs
alviszujevs@...
Aug 5, 2006 2:43 pm
4392
I don't really understand what you are asking. My doctor has always told me that Evans is not genetic. Alvis Zujevs <alviszujevs@...> wrote:...
My son has an "evans-like" syndrome (autoimmune neutropenia, ITP, coombs positive) and is currently being evaluated by the NIH for a genetic defect. Do you...
Our problem with Evans' started in 1983....there seems to have been very little progress....your doctor is speculating. Alvis Zujevs...
Alvis Zujevs
alviszujevs@...
Aug 5, 2006 5:15 pm
4395
Our problems with Evans' started in 1983...the genetic testing was done about 10 years ago and the title of the paper used to be on Lou's website. Alvis Zujevs...
Alvis Zujevs
alviszujevs@...
Aug 5, 2006 5:18 pm
4396
for your two children that are in remission what forms of treatments did they use? mindy...
... a retreatment of rituxan. thanks for all the great responses. we are still in the hospital they are going to start the rituxan treatments today i dont know...
They went in to remission after puberty. During flareups, they were treated with prednisone, IVIGG, cyclophosmamide and antiD. There does not seem to be any...
Alvis Zujevs
alviszujevs@...
Aug 5, 2006 7:05 pm
4399
well we are going home today from the hospital alex is stablized he had the rituxan yesterday he did great his blood count before the treatment yesterday...
Hi Let me first say that I am sorry to hear of your loss and that you have other children that has evans. My daughter is almost 19 now and is in remission,...
Hi they give blood thru out this treatment and have they tryed giving white cells only? IVIG has it been tryed? my child took retuxan worked for a bit had to...
Hi Mindy, That is such great news. How scary it must have been for you when his hemoglobin had dropped so low. Hopefully now the rituxan will kick in and...
Great news Mindy! We will keep Alex in our thoughts and hope that this is the beginning of a turn around for him. Thanks for keeping us posted, Heather (mom...
Yes, I have had a good response with Rituxan. I have taken two treatments the first one lasted me 18 months and then the second treatment lasted me 26 months....
Nick, thank you so much for your reply. that makes me feel so hopeful. ben too had 18 months (almost) with rituxan and we are hoping for your 26 months? how...
I was curious how low your son's counts were until you got results from Rituxan. Was it the whole four months before you saw ANY increase. My daughter had her...
hi lisa, where is your daughter being treated from? small world. we may have drs in common... ben's counts (platelets) fell below sub 10k in jan (2005). we...
