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Old 09-16-2009, 12:56 AM   #1
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Evans Syndrome

First time doing this sort of thing... Looking for others that have something similiar to Evans Syndrome to share info. My daughter is 10 and we have been in and out of the hospital since she was born. She has been on the Children's Hospital radar since she was 4. How are the other folks out their coping?

 
Old 12-02-2009, 07:47 PM   #2
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Re: Evans Syndrome

Hi, I just was told that they are pretty sure my 6 year old has Evans Syndrome. We found out when he started bruising really really bad and when they took blood his platelets were 2000. At first they said ITP. I am scared. Not sure what to expect from this point on.

 
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Old 12-03-2009, 11:44 AM   #3
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Re: Evans Syndrome

Hi there,
We found out when our daughter was 4 and she is now 10. It has really been a roller coaster ride. I would like to help or just lend an ear if you like. So, ask me anything. We go to the HEMONC group at Seattle Children's Hospital. We have one Hematologist (blood specialist) that tracks everything. We would be lost without him. A good specialist can really make all the difference. Any other symptoms/medications? How often are you getting blood counts? How is your son feeling?

Lari

 
Old 12-04-2009, 09:34 AM   #4
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Re: Evans Syndrome

My son is 6 he is a twin. He started bruising really bad and it scared me. I took him to the doctor and his blood platelets were at 2000. They did the IVIG twice, He was hospitalized for 2 days. He is feeling or seems to be feeling ok. I have to take him in Monday for our first official HemOnc visit. They will draw more blood monday. What medication do they use on your child? How does it affect her? Is this an ongoing daily struggle or does it seem to disappear? I am in Michigan. We go to the University of Michigan Mott's Childrens Hospital. I am thankful for you and your experience. It feels good to know someone else is dealing with the same thing. Thank you! My name is Vicki.

 
Old 12-11-2009, 09:35 PM   #5
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Re: Evans Syndrome

Hi Vicki,
I tried to post Monday, but I pressed the wrong button and 'poof'. So, here I am again. I am glad we are getting a chance to share information. Let me know if I overwelm you - Our situation may be unique and your son's condition may not be as severe.
Our daughter has low platelets too. She has taken IVIG for two years. Our doctor has given her the IVIG when she has been exposed to the Chicken Pox (she has had the vaccine, but her counts are low enough that she is considered immunocompromised) and to see if this could help her as a maintenance medication (infusion every 6 months). The first couple of times we thought it worked, but it was more of a coincedance. Right now she is taking cyclosporine (an anti-rejection medication) she is low, but stable. She had been taking steroids Sept - Nov. She had a slow taper off the prednisone or dexamethasone of 2-3 weeks, but her counts would just drop. So, she has been on the cyclosporine for almost 4 weeks now.
After the fifth year our daughter was considered chronic. She could outgrow this and/or there are other stronger medications we have not tried. Our doctor has a series of plans for us. Her condition is exasperated by winter virus's. Her immune response elevates to fight infection and then attacks her blood cells. She has a swollen liver and spleen (filtering the dead cells) and her bone marrow produces 2-3 times the normal amount of cells to compensate for the cell destruction. She has been tested for: 200+ cancers, 100+ infectious diseases, her GI tract has been scoped several times, and they even biopsied a lymph node. She has always been an old soul and has dealt with everything so well. When she was younger and had signs of stress we spent time with the Child Life Dept. they had techniques to practice role play games. She was the doctor and would explain and comfort the doll/patient. It really ment alot to her and when she thinks about the experience it offers her comfort.
How was your visit on Monday? Any more information and what are his blood counts? I hope all is well. Do you have the 'pediatric normal value's' for blood counts? If you don't I will post them.
Warmest Regards,
Lari

Here our her latest counts...
Hematocrit --> 27
Platelets -->227
WBC --> 3
ANC --> 1200

 
Old 04-28-2011, 08:03 PM   #6
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Re: Evans Syndrome

Hello! I am new to the site. My nephew was recently diagnosed with Evan's Syndrome. I am from Michigan as well and looking for some guidance/support/contacts. Thank you!

 
Old 04-28-2011, 08:06 PM   #7
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Re: Evans Syndrome

Hello! I am new to this site. My nephew was recently diagnosed with Evan's Syndrome and we are from MI as well. I am looking for some guidance/support/contacts. Thank you!

 
Old 11-11-2011, 06:38 AM   #8
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Chrisgreece HB User
Re: Evans Syndrome

Hi i ve had evans syndrom myself on 1999, this was very difficult for me but thanks God i am better

 
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