Hello everyone and anyone,
We updated our internet browser and every since have not rec'd any email
from the listserver. Could anyone send us mail to see if we can
still
receive it or did we somehow mess up our listserv access?
Thanks,
Jack & Raquel Miller
jara1@bellsouth.net
=========================================================================
Date: Mon, 10 Aug 1998
18:56:08 -0600
Reply-To: Information exchange and Internet
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: is anyone out there?
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Raquel, still here, but a slow couple of days I guess. How's Nicole doing?
Pat and Evajessie in Calgary
ps got Joanne Lindamoods pic today. Thanks Joanne. Love
the blue jeans too
-- i live in mine!
>
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
=========================================================================
Date: Mon, 10 Aug 1998
21:31:07 EDT
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From: Christina Mathis
<Nodrmat26@AOL.COM>
Subject: Re: is anyone out there?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jack & Raquel~
I haven't been receiving mail either until yours came. I'm wondering
what
happened? Anyone know? I thought my computer was acting
up again.
Goodnight,
Christina
San ANtonio
=========================================================================
Date: Mon, 10 Aug 1998
21:35:55 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: is anyone out there?
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi Raquel. We're still here; just been a bit busy. Carmen
Rae had an
appt. with the hand surgeon today and we were very encouraged about
the
results he expects. She will be having both thumbs released on
September
25; the day after good ole mom turns 30!!!!! How depressing!
=) Anyway,
also getting ready for a trip to Kansas. We leave on Friday to
surprise
Carmen Rae's Great-Grandma for her 70th birthday! Hope Nicole
is doing
well! Talk to ya later.
Robin Hill
----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: is anyone out there?
> Date: Monday, August 10, 1998 8:32 PM
>
> Hello everyone and anyone,
>
> We updated our internet browser and every since have not rec'd any
email
> from the listserver. Could anyone send us mail to see if we
can still
> receive it or did we somehow mess up our listserv access?
>
> Thanks,
>
> Jack & Raquel Miller
> jara1@bellsouth.net
=========================================================================
Date: Tue, 11 Aug 1998
12:33:09 EDT
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From: Stacey Jobe <JobeCST@AOL.COM>
Subject: New Family
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi our names are Chris, Stacey, & Tyler Jobe.
Tyler is 9 1/2 months old
and has Apert syndrome. He has had four surgery's so far
and will have his
first hand surgery Aug. 20th. (just 9 more days) My address is in Cisco,
Tx
but I live in the sticks about 15 miles away. Tyler is in ECI
(early
intervention services) and physical therapy. His doctors are
all in Dallas
Tx. In Jan. 97 Tyler had a fingernail surgery to remove his ingrow
fingernails. Thats when I met Dr. Genecov who now will be doing
his future
hand surgery's. Tyler's hand is cups very tightly and it is very
hard to cut
his fingernails. But since Genecov cauterized the bad places that i
coulden't
get to it's been alot easier. In March Tyler had his first shunt
surgery and
May 11th he had his Crainal Vault Remolding. July 14th he had
to have a shunt
revision surgery and he is doing great! He's not crawling yet
but Kaki, his
physical therapest said he would crawl the day before his hand surgery.
Dr.
Kenneth Salyer is his crainal facial doctor from Medical City Dallas
and Dr.
Shaprio is his Neurosurgon from Childrens Medical in Dallas. We were
going to
Scottish Rite in Dallas for his hand surgerys but there nurse made
me mad and
the doctors were not together on how they were going to do the surgery
so
Chris & I moved him to Medical City where Genecov and Hopkins or
Salyer's
associate will do his hand surgery's. We really like Genecov
and feel like
God led us to him because he is so nice, understanding and caring about
Tyler.
We have only met one apert family and there names are Mike and Kim
Fisher
from Wichita,Ks. There daughter Kindle (Im sorry if I diden't spell
her name
right) had her vault remolding two days after Tyler's. I feel bad because
i
haven't wrote or called her to see how she's doing. I need to
find out if
she's on this list or not. But. back to Tyler, he has really
done great threw
all his surgerys, in fact he has done better than Chris & I.
But were doing a
lot better and we have learned alot and finally realizes that we just
need to
put Tyler in God's hand and enjoy every second with him. If anybody
has any
advice about Tyler's first hand surgery please let me know.
Hope to talk to you soon,
Stacey, Chris & Tyler Jobe
jobecst@aol.com
=========================================================================
Date: Tue, 11 Aug 1998
15:30:46 -0400
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From: Steve & Stacy
<sshb@EROLS.COM>
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Welcome,
My daughter is 19 1/2 months . Her name is Brooke. She has also
gone
through lots of surgeries. Good luck with Clint's upcoming one.
Stacy Bell
Tiaan Odendaal wrote:
> Hi ALL
>
> My name is Jessica Botha. I joined the server about three weeks ago
with
> the help of my friend , Tiaan.
>
> I joined the server because I have a two year old boy that was born
with
> Apert syndrome.I was only 18 years old at the time.
> My son's name is Clint. He has had several operations on his face
and
> especially his hands , and next week the doctors are going to start
on
> his feet as they are webbed as well as his hands.
> Luckily he has'nt had any problems with his teeth or eyes etc.
> He is a very active little boy with lots of love in him.
>
> Tiaan and me are setting up a website for Clinty and we will let
you all
> know when it is going up.We stay in Pretoria , South Africa.
>
> I just want to thank you for the listserver which has helped
allot . It
> was so great to see other children with the same symptoms as we have
not
> seen other children here in South Africa with Apert Syndrome.
>
> Jessica
> tiaano@busconn.co.za
=========================================================================
Date: Tue, 11 Aug 1998
15:44:49 -0400
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From: Steve & Stacy
<sshb@EROLS.COM>
Subject: Re: Brooke is home!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Thanks Judy. Tell everyone we said hello. Brooke has really
come a
long way since she was in the NICU. Unfortuntaly all of her problems
have been the worst case senario of Apert syndrome and its
complications. Hopefully we are over the hump and can get on
with all
of the basics.
Stacy
Judy Gibson wrote:
> Stacy,
> I'm so glad to hear that Brooke is doing
so much better! The
> crew at St. Agnes will be glad to get the good news too.
>
> Judy
=========================================================================
Date: Tue, 11 Aug 1998
17:10:12 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: New Family
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Welcome to the family. We are the Krebs, Brian, Janine, Nicholas
and Emily,
our one year old with Aperts. Emily has had 3 surgeries so far
and is
scheduled for her first hand surgery in the fall. We have had
to wait for her
surgeon to be available. We live in New York. I am sure
you will find this
as informative and supportive as I have.
Again, welcome.
Janine Krebs
=========================================================================
Date: Tue, 11 Aug 1998
17:11:24 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: is anyone out there?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Same goes here for not receiving any mail. I turned the computer
on Sunday
night and there was no mail. I just checked again today, Tuesday,
and there
is only 4 messages. Seems kind of slow.
Hope all is well with everyone.
Janine
=========================================================================
Date: Wed, 12 Aug 1998
01:16:39 +0200
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From: Yngve Wallenius
<wallenius@MBOX303.SWIPNET.SE>
Subject: Re: is anyone out there?
In-Reply-To: <35CF911B.37526BB7@bellsouth.net>
Mime-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 8bit
Hello
I´m still here and reciving a lot of letter from all of you.
Yngve
=========================================================================
Date: Tue, 11 Aug 1998
21:39:24 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Welcome Jobe Family
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Chris, Stacey, & Tyler Jobe,
Welcome to the listserver. We are Jack & Raquel Miller in
Ft.
Lauderdale Florida. Our children are Michelle (14), Steven (10),
Erica
(4), and Nicole (10 months) with Apert Syndrome.
Nicole has had two surgeries. Tube in her ears, (June 98)
and her
cranial vault remodeling done on July 16, 1998. She is doing
great and
it is truly amazing as to how fast these children recover.
Nicole has an appointment next Wednesday with her hand surgeon.
Hopefully then we will find out when her first hand surgery will be.
Again, welcome to the family.
Jack & Raquel Miller
jara1@bellsouth.net
=========================================================================
Date: Tue, 11 Aug 1998
21:44:52 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Is anyone there?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Thanks to everyone who responded to our message "is anyone out there"?
We also thought that our computer was messed up.
I updated our browser this weekend and I thought that I messed something
up since we did not receive any new email. I guess that August
is the
vacation month.
Let's just chalk it up to no news is good news.
Jack Miller
=========================================================================
Date: Wed, 12 Aug 1998
08:15:12 EDT
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From: Jenngram@AOL.COM
Subject: Re: Welcome Jobe Family
Mime-Version: 1.0
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Welcome to the new families that have joined us......
My son, Jordan is 11 mos. old and has had 1 cranial surgery and 2 hand
surgeries...Sept. 11 w/ head in for hand surgery # 3, then Nov. 9 for
#
4....the remaining 2 will be done after Christmas.
Things here are crazy w/ summer vacations...and everyone else trecking
down
here for a visit...they alll say its to see us...I think being in Florida
has
something to do w/ it as well!!!
Hope everyone out there is doing well, and getting ready for the first
day of
school....I know here in Tampa/St. Pete I have already seen those big
yellow
busses out , and football practice is in full swing.....meaning the
end of
summer here
Jenn(Tampa/St. Pete)
=========================================================================
Date: Wed, 12 Aug 1998
08:57:04 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: FW: (no subject)
MIME-Version: 1.0
Content-Type: text/plain
Please welcome Sobia to the listserv!
> -----Original Message-----
> From: pc02 [SMTP:pc02@nottingham.linktraining.co.uk]
> Sent: Wednesday, August 12, 1998 7:14 AM
> To: CatNDon@apert.org
> Subject: (no subject)
>
> HELLO MY NAME IS SOBIA RANA AND I HAVE RECENTLY SUBSCRIBED
> IAM 16 AND I HAVE APERT SYNDROME
=========================================================================
Date: Wed, 12 Aug 1998
10:49:52 EDT
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From: Patbrat718@AOL.COM
Subject: hello everyone!
Mime-Version: 1.0
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Hi all,
Patti here (and Jazz too!) I am glad to see so many more people
joining the
listserve, its a scary place out in the world alone without support
like we
have here. Welcome, welcome, welcome!
Jasmyn is recovering well from her pneumonia. Almost herself again.
Her
surgery has been rescheduled for Oct 6. This time, her doctor
has decided
that we will cram all of her pre-op appointments into the day before
her
surgery, and not give her the opportunity to come down sick.
Two months also
gives us a chance to put a little meat back on her, before she has
to endure
that hospital stay :)
Is there some way that we can have a 'bulletin board' where we
can post our
surgeries and treatments and special events? I am still having
a hard time
keeping up with everyone and thought that if we each could just post
as things
come up, that would help. Sorry, I don't know much about the
Internet yet,
but maybe one of you do.
Patti
=========================================================================
Date: Wed, 12 Aug 1998
12:31:13 EDT
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From: Camous@AOL.COM
Subject: Re: Andrew Hartley
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I'm also late in catching up with my email!1 Summer logistics are killing
me
;)
Sometimes with all the post-op swelling after cranial surgeries, the
eye
muscles are affected. Evan did some upward gaze stuff also. Wait
about 4-6
weeks and you'll see a big difference. Especially in the eyes. Evan
also
became "master of the sideways glance" as his forehead was fo big that
he
looked up but couldn't see past it. so to see anything over his head,
he had
to turn his head and use sideways gaze. Most people who saw him do
this
thought it was just a cute mannerism...with no idea as to why he did
it!
Marianne
=========================================================================
Date: Wed, 12 Aug 1998
11:15:40 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Brooke is home!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Dear Stacy and Steve
Hope Brooke continues to do well at home and that you are able to spend
some
time relaxing and enjoying her and her sister. It has been a
long haul for
you. I saw your sweet girl on the OUt of the Shadows program.
Thank you
for sharing her with us. Take good care and enjoy the rest of
the summer.
Best wishes
Pat in Calgary
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
=========================================================================
Date: Wed, 12 Aug 1998
19:00:11 EDT
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From: Yonstein@AOL.COM
Subject: Re: Welcome Sobia
Mime-Version: 1.0
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Dear Sobia:
Welcome to the group. My name is Janine and my daughter is Emily,
1 year old.
This is a great place for information and support. Please write
and tell us
more about you, where you are from and what you like to do.
Again, welcome.
Janine Krebs (NY)
=========================================================================
Date: Wed, 12 Aug 1998
19:01:54 EDT
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From: Yonstein@AOL.COM
Subject: Fwd:
Mime-Version: 1.0
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Joanne asked me to please share this letter with all of you.
Janine
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Date: Wed, 12 Aug 1998 11:11:45 +0000
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Hi Janine!
I'm back, this time, I'm alone! Coal is supposedly resting.
I can hear
him playing with his toys though. Please share this message with the
list:
I have sent out photos and letters to everyone who has sent me one.
Unless I goofed, everyone should receive their mail by the end of this
week. Thanks for your patience!
I am home recooperating from a negative drug reaction which sent me
to
the ER yesterday afternoon. I had a headache and fatigue for
a week,
went to the Urgent Care and they prescribed a antibiotic. That's
where
my problems got worse. The antibiotic, Zithromax, tore up my
stomach. I
was in the ER for five hours and finally released to my own warm bed.
My
energy level, although increasing, is still near zero. I'm up,
do one
thing and crash again.
My dad was in a serious car accident last week. It's a pure miracle
he
was not seriously hurt or killed. My family has had enough excitement
for
the summer!
Talk to you all soon!
Joanne
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
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=========================================================================
Date: Wed, 12 Aug 1998
20:08:30 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Welcome Sobia Rana
MIME-Version: 1.0
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Sobia,
Welcome to the listserver. We are the Millers; Jack, Raquel, Michelle,
Steven, Erica and Nicole (with Aperts). Nicole is now 10 months
old and
has had her 1st cranial vault remodeling on July 16, 1998.
The people of this listserver will be of great support to you as well
as
you to us. Again, welcome!
Jack & Raquel Miller
=========================================================================
Date: Wed, 12 Aug 1998
22:59:06 EDT
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From: Nodrmat26@AOL.COM
Subject: Re: Welcome Jobe Family
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Welcome to the Jobe family!
My name is Christina and I have two daughters, Tia (5) and Zoey (18
mos) with
Apert syndrome. Zoey has had 4 surgeries, her tracheostomy, a
cranial vault
surgery and two surgeries on her hands. My advice on hand surgeries
is to try
and come up with things they will be able to play with before you come
home
from the hospital. When I brought Zoey home with both hands in
casts, I just
sat their and stared at her and didn't know what to do with her.
She couldn't
play with her usual toys. Her second surgery was better because
they only did
one hand. Also, I wanted to tell everyone that Zoey's original
cast was taken
off on Monday and the surgeon who did her hands told me that he was
please and
her hands just sort of "fell into place". He said he didn't have
to go
looking around for nerves and nerve endings. He did a wonderful
job with her
fingernails too, they look so "normal". I am very happy with
Zoey's hand,
hope her right hand does as well.
Again, Welcome Jobe family!
Christina
San ANtonio
=========================================================================
Date: Thu, 13 Aug 1998
20:15:06 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Clinical Studies -diagnosis,
teeth, hands, etc
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
A recent Medline search of has identified these papers (and others, but these are the ones I thought may be of interest). If anyone wants any more info and can't find it through these references given let me know and I'll see if I've typed anything wrong.
Cheers
Ann
NZ
Is this "Camous" anyone we know?
"Prenatal ultrasonographic and molecular diagnosis of Apert Syndrome"
K Filkins, JF Russo, S Boehmer, M Camous, KA Przylepa, W Jian, EW Jabs
Department of Obstetrics and Gynecology, Western Pennsylvania Hospital,
Pittsburgh
Prenat-Diagn.1997 Nov; 17(11) : 1081-4
A first-trimester ultrasound evaluation prior to chorionic villus sampling
for maternal age 41 was within normal limits except for the suggestion
of a "mitten-like" hand and proximally placed thumb. Mid-trimester
ultrasound was not diagnostic; however, following the development of polyhydramnios
in the third trimester, the evaluation of the digits and facial features
were strongly suggestive of Apert syndrome. Amniocentesis was performed
and a molecular diagnosis of Apert syndrome was made and confirmed on cord
blood.
Did someone ask about the kleeblattschadel anomaly? If so let me know and I will send a copy of the search result.
The Tolarova paper re "Birth prevalence, mutation rate, sex ratio, parents' age, and ethnicity in Apert Syndrome"
"Ultrasound detection of Apert syndrome: a case report and literature
review"
K Kaufmann, S Baldinger, L Pratt
Park Nicollet Perinatal Clinic/Minnesota Health System, Minneapolis
Am-J-Perinatol. 1997 Aug; 14(7) : 427-30
Prenatal diagnosis of Apert syndrome is reviewed.
"Apert syndrome, not Apert's syndrome: Apert neither had nor owned the
syndrome that bears his name" (editorial)
MM Cohen Jr
Plast-Reconstru-Surg.1997 Aug; 100(2) : 532-3
"Imaging of the Apert syndrome hand using three-dimensional CT amd MRI"
IW Holten, AW Smith, JI Isaacs, MH Moore, DJ David
Dept of Radiology, Royal Adelaide Hospital, Australia
Plast-Reconstr-Surg.1997 May; 99(6) : 1675-80
Imaging of the Apert syndrome hand is usually done with plain x-rays.
This gives only a limited assessment of the grossly abnormal anatomy.
Computed tomography (CT) and magnetic resonance imaging (MRI) have the
ability to comprehensively demonstrate the spatial arrangement of the bones
as well as the anatomy of the soft-tissue structures. This paper
demonstrates the use of these two imaging modalities in the complex Apert
syndrome hand to improve surgical planning and treatment.
"Dental development in Apert Syndrome"
S Kaloust, K Ishii, K Vargervik
Dept of Growth and Development, University of California at San Francisco
Cleft-Palate-Craniofac-J. 1997 Mar; 34(2) : 117-21
... The purpose of this study was to evaluate the development of the
dentition and compare it will that of unaffected children. There
appears to be clinical observations indicating delayed eruption of the
permanent teeth in the Apert child. ... RESULTS: Thirty-one of 36 individuals
had a dental age lower than their chronologic age. ... The range
in delay was 0.5 years advanced to 2.9 years delayed. There was a
positive correlation to increased age with greater delay in dental development
(p<.05). CONCLUSION: Our study confirmed our clinical impressions: The
results showed a mean developmental delay of 0.96 years, with a trend of
increasing delay with increased age. This positive correlation found
between increased age and increased delay parallels the general growth
of Apert children, with a greater degree of delay as the child grows older.
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Date: Thu, 13 Aug 1998
08:04:30 EDT
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From: Jenngram@AOL.COM
Subject: Re: Clinical Studies -diagnosis,
teeth, hands, etc
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"Camous" is Marianne Camous...little boy Evan in the San
Francisco Bay area
Jenn(Tampa/St. Pete)
Thanks for the list of related articles!!!!! :) Always up for a good
read!!!!!
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Date: Thu, 13 Aug 1998
17:14:37 -0400
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From: foster <foster@ICONTECH.COM>
Subject: No sugery today
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Wanted to let you guy know that Billy was not able to have his surgery
today
because of a sinus infection that appeared yesterday. He is running
a fever
and his surgery will be rescheduled for the last week of Augt. or the
first
week of Sept. He has finally popped out three teeth and is bitting
everyone
who gets close enough.
Also wanted to welcome all of the new families.
Sorry to hear that your Dad had an accident Joanne but, happy to hear he is ok.
Hope all is well with everyone else.
Karen (PA)
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Date: Fri, 14 Aug 1998
13:21:07 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: No sugery today
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Hi Karen et al
>Wanted to let you guy know that Billy was not able to have his surgery
today
>because of a sinus infection that appeared yesterday.
Rotten luck with the sinus infection. Hope it all clears up for the next scheduled date.
The latest issue of the UK Craniofacial S/G newsletter has an article on "Anaesthesia for Craniofacial Surgery Doesn't Make You Sick". It says "Psychological stress is one of the biggest causes of the physiological distress that takes a patient beyond their normal parameters, and, as a result, makes them difficult for the anaesthetist to keep stable during surgery." etc, etc, and the "Factors affecting distress" are listed as "age of child, previous experiences, the severity of any illness and the way the child has been prepared for surgery".
We have young children who, once they have had one op and know what it is about, have previous experience and know full-well that what is going to happen won't be fun.
A lot of our kids get sick at the worst possible moment. No wonder - I think I would succumb to the stress as well and get sick!
And if they are stressed before the op I can understand it affecting how they respond to the anaesthesia. But who has the answer for ensuring our kids (and us!) are relaxed about all this? I may have the information about what is going to happen, but it certainly doesn't make ME relax!
Unless I have missed something, there is nothing in this article about pre-meds. What is the current thinking on their effectiveness in preventing that very understandable panic our kids can feel when heading for theatre, and their post-op benefits?
And if you aren't on the mailing list for this UK newsletter I recommend you send over a donation and get on it. They have helpful, interesting and relevant information.
Regards
Ann
NZ
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Date: Thu, 13 Aug 1998
21:39:50 EDT
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From: ETolson643@AOL.COM
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Ann
I wrote before about this exact experience we have had with Tim.
He gets VERY
sick from the anesthesia and NOTHING has helped. When he was
brought into the
OR for his midface advancement a year ago, he vomited solid food...and
he
hadn't eaten for twelve hours! Dr. Ferraro attributed this to
the
psychological aspects of undergoing such a big procedure, especially
when the
kids know, from experience, that it won't be pleasant. Dr. Ferraro
said Tim's
digestive tract had totally shut down and stopped digesting....from
nerves.
We then readmitted him several months later on the day before the surgery
and
started IV valium. This seemed to help...Dad and I would have
liked some,
too!!! This approach worked and the surgery was a go.
Beth Tolson
Boston
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Date: Thu, 13 Aug 1998
20:34:55 -0500
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From: Charles LeCara
<cal@PHOENIX.NET>
Subject: Sarah LeCara's surgery
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Just a few lines to Thank all of you. And to let you know that everything
has worked out just fine for our Sarah !!! We even had a miracle we will
explain all later .
Sarah is home now and doing very well. She had the midface (Laforte
3) advancement and total vault rebuild all at the same time on 8/5/98.
Dr Salyer and his crew are completely amazing she had only a small amount
of swelling and draining .If anyone would like to more details Just ask
we have video tape and a lot of digital pictures of before and after .
ALL OF OUR LOVE
The LeCara's
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Date: Thu, 13 Aug 1998
23:44:16 EDT
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From: BOp1912@AOL.COM
Subject: Hi
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Hi Listserve
My name is Beth , And I have a few questions
Is there anybody older then
me who has this Apert Syndrome I will be 34 in about a week ?
If there is I
would like to get in touch with them .... I sent the pictures
out today to
the people who sent them to me sorry so late getting back to you all
working
alot of overtime tring to save for a new car.... Joanne sorry
to hear about
your Dad is he doing all right ?? Judy and how are you doing
I am doing fine
Send me an Email sometime Well that enough for now Talk to you all
later ...
Friends Beth
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Date: Fri, 14 Aug 1998
08:07:42 EDT
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From: Jenngram@AOL.COM
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One thing that has helped Joe and I ...and I ahve to believe Jordan
is that
his doctor always carries him back. Needless to say, this man could
be a part
of our family after 3 surgeries and numerous visits to his office.
They have a
good rapor and like each other very much, so when it comes time to
head back
he gets Jordan and carries him and sits while they do their thing in
the OR.
He has his scrubs on, but no mask at this point so he doesn't appear
scarey.
And of course, Joe wears scrubs everyday, so Jordan thinks that everyone
wears
PJs and white coats.
He may be too young to really be comforted by all this, but it works
for us,
as when they go back he could care less about us, and is busy chatting
and
playing w/ the doctor.....Meanwhile I head for the nearest bathroom
to toss my
coffee!!!!! At least I wait for him to leave!!!!
Jenn(Tampa/St. Pete)
=========================================================================
Date: Fri, 14 Aug 1998
14:52:16 EDT
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From: Camous@AOL.COM
Subject: Re: Clinical Studies -diagnosis,
teeth, hands, etc
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In a message dated 8/13/1998 1:18:19 AM Pacific Daylight Time,
howrdnan@IHUG.CO.NZ writes:
<< Is this "Camous" anyone we know?
>>
Wow!! Thanks Ann!!
This "case" is Evan! As I ran back to work after the 3 hrs of ultrasounds
which resulted in the original presumptive dx and ran a medline which
I shared
with the genetics team, as well as going forward with the "experimental"
DNA
test, Dr Filkins gave me authorship credit! And this is supposedly
a very
prestigious journal!! I didn't know it had finally been accepted and
published. COOL!
Thanks for the update. I had been thinking of running another search
but this
summer has been a real logistical challenge. I'll try to do the next
update.
And yes, I am still trying to get the photos out....once the process
was
interrupted, i have had to dig around and find all the components as
there are
too many little people using this desk.
Now off to our first orthodontal sppointment for Sarah!! Ugh!
Marianne
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Date: Fri, 14 Aug 1998
14:54:35 EDT
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From: TFinch10@AOL.COM
Subject: Re: APERT Digest - 12 Aug 1998
to 13 Aug 1998 (#1998-3)
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Ann--
What is the address for the UK craniofacial organization and/or newsletter?
thanks,
Jeanne in Boston
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Date: Fri, 14 Aug 1998
15:29:27 EDT
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From: Camous@AOL.COM
Subject: trachties
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For all of you with kids with trachs- i just got info on a listserv
called
Trachties. I am pasting below the info- Don, Maybe it could be a link
from
Teeter's Page. There are only a few of us who are dealing with trachs
with our
kids but it almost outweighs many of the other issues.
Marianne
<<We would love to have you as a subscriber to Trachties. If you
have any
questions
or problems, please e-mail me or go to
http://member.aol.com/trachtube/trachtie.htm
We are trying to
reach as many families as possible. Since Trachties is a very
new listserv,
we are looking for more families who can offer support about tracheostomies.
Thanks again for your interest in our group.
Kelly Killough - mom to Dakota 3 1/2 yr - trach, laryngeal atresia,
microgastria
KEKILLOUGH@aol.com>>