Hello,
We're new to the group. Our heads are reeling after 6 weeks of blood
draws, doctors visits, x-rays and a bone marrow biopsy. Our
beautiful, vibrant baby girl, who just turned 18 months old, was
diagnosed with Evans Syndrome.

Extreme bruising and enlarged lymph nodes under her right arm sent us
to the doc. Otherwise, she has been physically perfect. I can't
track onset to a specific event. She had all of her childhood
vaccines just through six months. (I stopped her vaccinations at
that point when her older brother was diagnosed with mild autism.)
Unlike her brother, she did have fevers--though not more than 100.5--
with each round of shots. Shortly before the bruising became
extensive she had a nasty cold which held on longer than her other
mild colds. So...I don't know for sure what the trigger might have
been.

Ashley has low platelets and is neutropenic. You know the drill:
she was tested for VonWillebrands, ALPS (especially with the enlarged
lymph nodes on one side), and a host of other things I've never heard
of. She tested Coombs positive. When she crashed after the first
IVIG, her doctor ordered the BMA and biopsy. That was clear, too.

Ashley is to begin prednisone tomorrow. We tried IVIG twice. She
responded beautifully, but her platelets crashed within 8 days. (She
went from 500,000 to 23,000 in 8 days). This week her ANC is down to
104. You would never know it by looking at her. Her blood may be
sick, but she certainly is NOT.

I remember when the Hematologist told me they were testing for so
many disorders, I said, "but I had an amnio--wouldn't these have been
detected?" I'm sure there are a few of you who are saying "Been
there, done that!" I am so discouraged with the lack of information,
research studies and support available to "us." I already felt that
way dealing with my son's autism; this is worse!

Here are some of my questions:

* Are there any list-members from the Orlando area?
* Who do you use as doctors?
Our Hematologist is Dr. Paul Gordon with Nemours, and he has
a great background--internship and residency at St. Judes. I just
wonder if we need to get a second opinion?
* Do we need to see an immunologist, too?
* Who are the best docs for treating Evans--in any state?
* What disorders do some of the docs (immunologists)point to
underlying Evans?
* Are there other members who have toddlers being treated?
* What has been successful for those having low platelets and ANC?
* I saw the most recent post on a research study that didn't even
mention Evans as potential participants. Are there others?

We're trying to deal with this a step at a time. Ashley is the light
of our lives--the "normal" we craved and cherished after our son was
diagnosed with autism. (Even though he is mild, it's still a
challenge!) The possibility of losing this cherished gift is beyond
comprehension; I can't even think about that as I can't function "in
that place." I know many of you out there understand.

I personally think it is unacceptable that more hasn't been
accomplished in solving the puzzles of the immune system. (I am
confident my son's autism is also linked to his immune system.) I was
astounded to find an Evans Syndrome registry, application for
clinical trials, research questionnaire, and other info available to
U.K. patients. How do we get to this point? Through the NIH?

I truly appreciate any input you can provide, as well as personal
advice and wisdom to share.

Denise & Scott