Hi, My teen-age son has been experiencing low fevers (around 99.8-100.4) as often as twice a week for the last few weeks (and had the same experience last...
Hi there, I just joined this group to learn more about Evans as my son's doctor told us it is a possibility. I read your post and my son having fevers was the...
My son was turned down for the NIH study, his platelets were not low enough. (Actually I am glad they were high)... but does anyone know of an Evans Study we...
What is an NIH study?? Erin stillermom <andicipa@...> wrote: My son was turned down for the NIH study, his platelets were not low enough. (Actually I am...
..the US Government will study rare diseases....when there isn't enough profit for drug companies to find a cure or treatment for a disease...cause the amount...
Thank you for the information. Erin stillermom <andicipa@...> wrote: ..the US Government will study rare diseases....when there isn't enough profit for...
DW Does your son have a low white count? Is he nuetropenic or lymphopenic? Does he have low IgG levels? Sometimes low white blood counts can spark a...
HELLO ALL, I HAVEN'T POSTED IN AWHILE BUT I AM STILL READING. MY SON, PAUL, OFTEN GOT LOW FEVERS AND ACHES AND PAINS WHEN HIS COUNTS WERE LOW. CURRRENTLY HE...
Hi to everyone, I am new to this group and am looking for other people to talk to. I have done a little bit of looking through the questions which have been...
Hi Rachel! Welcome to this group...I am a fairly new member and check in once in awhile... My son who is 14 1/2, became ill in August 2006. He has hemolytic...
Erin - Thank you for responding, it is much appreciated. I am very sorry to hear about your son. The doctors had my daughter on folic acid shortly after she...
Hi Rachel! Glad to hear back from you... Patrick is on 25 mg of prednisone right now...He is taking 15 mg in the morning and 10 mg late in the afternoon......
Dear group, I joined this group when last winter it was thought our Jonathan (now age 22 mos) was Evans. He presented first with ITP, then all his blood lines...
Hi Julee, I will keep Jonathan in my prayers for successful treatment that may include a transplant. Thank you for keeping us updated with the latest news....
PLEASE! Find out about and Let your kids use EMLA before they have to have IV's or blood taken! A lot of doctors won't suggest it, may not even know about...
Rachel, My little girl Madison is 7 years old and was diagnosed with Evan's when she was almost 5 years old. She has had normal counts now for about 4 months...
SEEING THE POSTS TODAY ABOUT BLOOD DRAWS, YES WE USE THE ELAM TOO, ALSO LIKE EVERYWHERE SOME PEOPLE ARE BETTER DRAWING BLOOD THAN OTHERS, AT THE HOSPITAL ...
... Evan's when she was almost 5 years old. She has had normal counts now for about 4 months after being on 6mp. I am sorry to hear that it did not work for...
Hi Erin - I'm happy to hear that your son's numbers are rising. Rhea get very hungry when she is on prednesilone. I think she is constantly eating or saying...
Hi Rachel! Patrick's Hgb was 11.8 today and prednisone is being lowered to 20 mg on Thursday. Drs are running more tests. They are discussing a different...
Lisa - Rhea, my daughter, was on 6MP for about 15 1/2 months. It seemed to work good in the beginning and then the docs. weren't getting the results they...
Hi Rachel, I hope the stomach x-ray turns out okay on Rhea. Let us know what the results are. Have you asked her doctor about the possiblity of bacterial...
Hello Rachel, I have been reading your emails on Rhea and my heart goes out to you. My son Teddy was diagnosed at 15 months and at 3 and a half he ended up...
Hi Rachel..I am Madison's grandmother. I just wanted to let you know that you DO NOT have to use the tegraderm to cover the Emla. The tegraderm can stick so...
Amy, We took Rhea in yesterday and of course nothing went smoothly. However we did have a better outcome at the lab. This time I put the EMLA on her arm and...
RACHEL....your Dr. said to use METAMUCUL? That is a laxative ...if diarrhea is a problem....I don't think Metamucil is the answer...plus it is fiber...tht...
Dear Debra: Oh, thank you, I loved your response. I'm Rachel's Mother, Kim. I found this web sight and have paid for one years subscription for Rachel for...
Hi, I would like to see the importance of this group. I've worked in a laboratory and the government. If this support group has helped please vote. Yes or No....
yes, the government, NIH is for helping with RARE medical research...but it is looking into ITP...NOT Evans... Can we organize a campaign to write up our...
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