From: nicolegofman <nicolegofman@...>
Subject: [EvansSyndrome] Re: New To Evans
To: EvansSyndrome@yahoogroups.com
Date: Monday, December 8, 2008, 9:57 AM

Hey Susan,
My son has much of the same ailments...when he was 3 they removed a
swollen lymph node from his neck and in the years following his other
glands swelled up as well (neck, underarms, and groin) when we were
first admitted to the hospital his spleen was down near his belly
button!
We've also been fighting skin infections since he was two, the drs
always explained it as folliculitus. ..never even looked into his
counts. It wasn't until one of the sores got severely infected that
they caught the low levels. His ANC was about 200 (and headed to 0)
when we were first admitted!
Zack was on neupogen for two months, but it is so specific to the
white cells, and he has problems with all three now so that wasn't a
long term option. IVIG doesn't really work for him either, it has
immediate affects, but we were getting infusions every two weeks
because they weren't lasting for more than a few days.
Rappamune is an immuno suppressant like cyclosporine. ..usually given
to transplant patients, but with miinimal side affects (and it tastes
really bad). He also just got weened of steroids, they seemed to do
wonders for his counts, the side effects are just not ideal. He was
so grumpy all the time!
He has also been tested for ALPS, but both tests came back negative,
and my mom keeps asking if it is really Evans and not something
else...but he has all the antibodies to his own cells, so it can't
really be anything else!
It is so reassuring to know that there are individuals out there
leading normal lives, when was your son first diagnosed? We too are
trying to place emphasis on what Zack can do...he wasn't really built
to be a football player anyway!
Thanks again for sharing your story!

--- In EvansSyndrome@ yahoogroups. com, SAnder823@.. . wrote:
>
>
> Hi Nicole,
> I'm glad you found this group - we all know what you are going
through. My
> 16 year old son has autoimmune neutropenia and ITP. He is also
Coombs positive
> but hasn't had any problems with his red cells yet. He has been on
an
> extremely low dose of neupogen for the past 9 years to keep his ANC
at a safe
> level. When he was neutropenic his main problems were skin and
sinus infections.
> We've done various treatments over the years for the low platelets -
IVIG,
> WinRho, high dose steroids.
>
> My son has had extensive immune evaluations to rule out ALPS and
other
> similar disorders because he has mild spleen and lymph node
enlargement. His IgA
> is low (it was fine when he was first diagnosed) and he does not
respond as he
> should to vaccinations - another clue that something is not right
with his
> immune system. They consider him CVID-like, but he really doesn't
fit any
> current immune deficiency diagnoses. HE is currently in a study at
the NIH and
> they are looking for more patients like him. Here is a link to the
doctor
> leading the study if you want to pass it along to your doctors -
>
_http://www3. niaid.nih. gov/labs/ aboutlabs/ lhd/humanImmunol ogicalDiseas
esUnit/_
>
(http://www3. niaid.nih. gov/labs/ aboutlabs/ lhd/humanImmunol ogicalDiseas
esUnit/) .
>
> It was extremely hard (and scary) in the beginning, but you learn
to deal
> with the rough times as they come, and really enjoy the periods of
good counts
> when you have them. My son is now a high schooler and actively
involved in
> scouts. He knows that he needs to limit certain activities when his
platelets
> are low, but overall he doesn't miss out on much - mainly because
his interests
> have drifted towards things that aren't affected by his counts
(music,
> computers, etc).
>
> Like you, we have wonderful doctors involved in his care (we are in
NJ). I
> think that has been key for me, as well as my son. Sometimes all
the
> information available can be quite scary - it is good to have
doctors who can put it
> all in the proper perspective - even when they don't have all the
answers (I
> don't think any doctors do when it comes to Evans type patients!).
I am
> extremely encouraged by all the research and interest in this area
now - I truly
> believe we are moving much closer to understanding and finding
treatments for
> disorders like this. We just need to keep our kids as healthy and
happy as
> possible in the mean time!
>
> Susan
>
>
> In a message dated 12/7/2008 10:10:10 P.M. Eastern Standard Time,
> nicolegofman@ ... writes:
>
>
>
>
> Hi all!
> I am a Mom of a little boy (Zachary age 5) whom was recently
diagnosed
> with Evans...4 months ago to be exact. Since then our lives have
been
> literally turned upside down!
> We are at the hemotology office two to three times a week; Zack
has
> issues with all three of his blood lines. It first manifested
itself
> as neutropenia, then went on to thrombopenia, and most recently
> anemia. He is currently on Rappamune, and the doctors are flirting
> with the idea of putting him on cyclosporine. As parents we are
> completely overwhelmed, and feel totally helpless!
> We are currently being treated at the Childrens Hospital of
> Philadlephia and couldn't be happier with the doctors there. We
are
> just curious if this constant battle gets any easier..the docs say
it
> will but its hard to see the light at the end of the tunnel!
> Anyone out there go through the "exploratory" stage? Does it get
any
> easier to manage? Is it a matter of finding what works for the
> individual?
>
> Thanks for letting me vent!
> Nicole
>
>
>
>
>
>
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