--- In EvansSyndrome@yahoogroups.com, "dml0425" <dml0425@...> wrote:
>
> 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>
Can I please ask you a question? Were both of your children given
vaccinations by the same pediatrician.