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To: 11q_disorders@yahoogroups.com
From: erinrebecca2002@...
Date: Sat, 31 May 2008 21:04:23 +0000
Subject: [11q_disorders] Questions...

Okay all...Serena is still at it here in the hospital. She's just
continuing to scream and scream. Not just a "hey I'm wet" scream but
one that sounds like someone is beating her to death. She goes for
hours and hours on end. Has any of your children diagnosed with
Jacobsen's Syndrome gone through something similar? Was it diagnosed
and or linked to a problem outside JS or was it considered part of
JS? No one here at the hospital seems to know anything about JS or
anything.
The doc's this morning again are saying she's fine and nothings
wrong. Also they're trying to blame everything on her brain function.
Well I'm sorry but if it is than why is nothing seeming to help her,
why is she continuing like this, and why hasn't she done it before
this? The doc today was real condesending and treating me like I'm
stupid and don't know anything.
Then also Serena's skull, in her forehead right above her eyes, was
born fused instead of soft like a typical baby. This has caused her
forehead to proturde out and you can see a prominent ridge on the top
of her head where the back of her skull has grown and the front still
sets way lower. I've looked up the condition and several sites have
stated that this can cause similar symptoms as a shunt malfunction
even if the shunt and pressure are "normal" and also that if left
untreated/not fixed can be fatal. I've brought this up to the doctors
and they'll hear none of it. They basically tell me it's not that and
that I don't know what I'm talking about.
Does anyone here know of any good doctors familiar with JS in the
St.Louis or Kansas City area that they'd recomend that can also take
Medicade? I'm just so fed up with the doctors here. My next step if
they can't find anything and just blame it on her mental state again
is to go to Cardinal Glennon, the other children's hospital in Saint
Louis and see what they say. I hate keeping her in the hospital but
this is ridiculus that no one can tell me even how to make Serena
more comfortable. The docs just keep ignoring the question. I'm doing
all I can do to help her calm down but it doesn't work. She can't
keep going on and on screaming and getting only a couple hours of
good sleep a night....and neither can I. Not that I want her
completely doped up but I just can't find answers for anything and am
getting ignored here and treated like I'm a 16 yr. old with a
kid...which I'm not.
Any and all suggestions are helpful. Thanks.
Erin