Interesting info Janine. Don't suppose you kept a note of the website address did you?
Thanks
Ann
NZ
=========================================================================
Date: Sat, 29 Aug 1998
07:31:35 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: BBarn60368@AOL.COM
Subject: Shirley Barnett
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Andrea,
We are just outside of Orlando. We corresponded with you before,
don't you
remember? I wrote you and you answered and gave us another e-mail
address, I
responded and never heard back. Anyway, my daughter Shirley has
Apert. She
is 5 years old. She started Kindergarten this year. She
has had 8 surgeries:
2 on head, 3 on hands and feet, adenoids removed, extensive dental
work and
one time we put her to sleep and could never find a vein to run the
lines. It
seems there is one more surgery that I can't recall. Did you
ever think there
would be a time when you couldn't remember one of the surgeries?
I think the listserv is wonderful. When Shirley was first
born I had a
really hard time accepting that I was part of a group called Apert
Syndrome
Moms, even though I met some and really enjoyed our time with them.
I have
been reading your e-mail for some time now and I can honestly say that
I am so
very proud to be a part of this group. You are all so supportive
and so
loving.
Alice, just outside of Orlando, Florida
=========================================================================
Date: Sat, 29 Aug 1998
07:33:25 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: BBarn60368@AOL.COM
Subject: Shirley Barnett
Mime-Version: 1.0
Content-type: multipart/mixed; boundary="part0_904390406_boundary"
This is a multi-part message in MIME format.
--part0_904390406_boundary
Content-ID: <0_904390406@inet_out.mail.aol.com.1>
Content-type: text/plain; charset=US-ASCII
Andrea,
We are just outside of Orlando. We corresponded with you before,
don't you
remember? I wrote you and you answered and gave us another e-mail
address, I
responded and never heard back. Anyway, my daughter Shirley has
Apert. She
is 5 years old. She started Kindergarten this year. She
has had 8 surgeries:
2 on head, 3 on hands and feet, adenoids removed, extensive dental
work and
one time we put her to sleep and could never find a vein to run the
lines. It
seems there is one more surgery that I can't recall. Did you
ever think there
would be a time when you couldn't remember one of the surgeries?
I think the listserv is wonderful. When Shirley was first
born I had a
really hard time accepting that I was part of a group called Apert
Syndrome
Moms, even though I met some and really enjoyed our time with them.
I have
been reading your e-mail for some time now and I can honestly say that
I am so
very proud to be a part of this group. You are all so supportive
and so
loving.
Alice, just outside of Orlando, Florida
=========================================================================
Date: Sat, 29 Aug 1998
07:50:40 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: Hello Friends!!!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
In a message dated 8/26/1998 10:17:53 PM Pacific Daylight Time, Thornq@AOL.COM
writes:
<< One of the main reasons they said it is because he
has a slight underbite. Isn't that jaw related and not
facial related? My
Anatomy class is failing me right now. What is a dentist's
role in the whole
scheme of things. >>
Hi Lynn,
It's good to hear from you. Your summer sounds on a scale with ours
in terms
of activity!!
Here's my recent experience on the "underbite" situation. Recently
took Sarah,
our eldest (age 7 1/2) to the orthodontist as she doesn't have room
in her jaw
for her pemanent lateral incisors to come in. Had Kate, the 5 year
old with us
and he snuck a peek at her. Turns out she has what I might have referred
to as
an underbite (lower jaw coming out slightly in front of her upper when
she
bites down). I had seen it a few times and thought she was just doing
a "silly
kid trick" but no- she has what he referred to as a "crossbite" and
just about
broke out in a cold sweat! She will need a full set of X-rays
at age 6, and
if her "midface development" doesn't catch up he mentioned that she
might need
to see Dr Schendel (who happens to be Evan's craniofacial surgeon).
I almost
threw up on the spot at the thought of cranial surgery for another
kid! To
look at her, you'd never thing "midface problems" and as she has a
broader
face than Sarah, we thought she'd get off easy from an Orthodontal
perspective. And I'm dealing with a very conservative orthodontist
with years
of experience.
I guess that the one thing I've learned the hard way through Evan's
two years
of experiences is to take estimates and prognostications about future
surgeries with a grain of salt. Thought we'd get 1-2 years out of his
first
frontal advancement and 6 month later his head was tight. Told he's
have the
trach for 12 months and it'll be several more years. Thought that stenting
was
going to be the correction needed for the airway but it will require
the
midface.....etc. guess the growth patterns of the bone due to
genetics are
less predictable than even the most experienced docs want to admit.
And our
kids are having levels of correction done with techniques that weren't
available in the past....so everything is less predictable. To paraphrase
John
Lennon "Life is what happens when you're making your plans"...couldn't
be
more true!!
Marianne
=========================================================================
Date: Sun, 28 Jun 1998
19:48:38 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: My picture
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
I apologize to those who have not yet received my picture. I didn't
think
I'd be this far behind in things.
I took some pictures this week, and get them developed and out to you
by
the end of this week.
I wish all those who are going back to school the very best of luck...
I hope Carmen Raye is feeling better.
-Andrea
=========================================================================
Date: Sat, 29 Aug 1998
23:56:33 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Rachel Fletcher:
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Rachel:
Thank you so much for the before and after pictures. They came
at just the
right time. Seth cried himself to sleep last night because he
doesn't want
to look different after the surgery on the 15th. He is afraid
that his
friends won't know him. His crying broke my heart and made me
feel weak
and unsure. Your pictures gave me back my strength and resolve.
Thank
you.
Warmly, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Sun, 30 Aug 1998
20:07:07 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Hello Friends!!!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Turns out she has what I might have referred to as
>an underbite (lower jaw coming out slightly in front of her upper
when she
>bites down).
Thanks for clarifying this Marianne. I had it the wrong way around obviously!!
So sorry to hear that you are having to deal with two children undergoing surgery. Hopefully they will bond even more strongly having both had to deal with this issue.
Hugs
Ann
NZ
=========================================================================
Date: Sun, 30 Aug 1998
20:07:13 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: HANDLE
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Kia Ora "Family"
If you read the message I forwarded from Lark Jarvis re maths, you will recall she recommended I contact HANDLE. I have done so and this is Judith Bluestone's reply. I find this fascinating and hope you do too.
Regards
Ann
NZ
Return-Path: judith@handle.org
Reply-To: <judith@handle.org>
From: "Judith Bluestone" <judith@handle.org>
To: "Howard & Ann" <howrdnan@ihug.co.nz>
Cc: "Ann Brownlee" <Cb5870@aol.com>
Subject: Re: Apert Syndrome and maths
Date: Fri, 28 Aug 1998 15:27:45 -0700
X-MSMail-Priority: Normal
Dear Ann,
Your letter from Aukland found me in London! Isn't e-mail amazing.
With regard to your questions, I will answer in capitals in the body
of
your letter.
----------
> From: Howard & Ann <howrdnan@ihug.co.nz>
> To: judith@handle.org
> Subject: Apert Syndrome and maths
> Date: Wednesday, August 26, 1998 4:27 AM
>
>
> Kia Ora Judith
>
> Ann Luxton here from Auckland, New Zealand. It has been recommended
that
I contact you to see if you can help with a possible problem.
>
> Our 7+1/2 year old daughter Amy has Apert Syndrome and apart
from NOT
being well coordinated physically (she can run but it looks like she
has to
work at it) she is coping well with her schoolwork in most areas.
The
exceptions are maths and art. I'm not terribly concerned about
the art
because she is improving (though still probably 2-3 years behind),
but in
maths she appears to have hit a block. She has been working well
in the
early maths work but she is now in year 3 (children start school at
age 5
in NZ) and this appears to be a problem.
>
ART AND MATHS ARE MORE CONNECTED TO COORDINATION THAN ARE READING AND
WRITING. ART, MATHS AND COORDINATION ALL DEAL WITH SPATIAL RELATIONS
WHICH
DEVELOP FROM PROPRIOCEPTION (THE BRAIN'S UNCONSCIOUS AWARENESS OF THE
SENSE
OF BODY IN SPACE) AND THREE DIMENSIONAL PERSPECTIVE WHICH IS AN ASPECT
OF
BINOCULAR TEAMING. THIS SPATIAL ASPECT IS ALSO LARGELY A FUNCTION
OF THE
RIGHT CEREBRAL HEMISPHERE.
> The best example for Amy is probably the two times table. When
Amy is
checked for her 2 times table either in sequence or out of sequence
there
is no problem. However, if something comes up that requires a
2x response
she hasn't a clue. We were playing a game with dice the other
day and she
had to multiple 2x5 and she had no idea, even when I gave her some
clues.
Same thing happened the next day with something else we were doing.
>
IT APPEARS THAT AMY IS MORE COMFORTABLE WITH LANGUAGE AND ROTE LEARNING,
ALL LEFT CEREBRAL HEMISPHERE FUNCTIONS. THE UNDERSTANDING AND
CONCEPTUALIZATION OF MATH OUTSIDE OF ROTE MEMORY IS THEREFORE MORE
DIFFICULT.
> She also cannot make the link between the use of words and the use
of
signs. She knows the signs for plus, times, division, etc, but
if it is
put into words in different ways she cannot make the connection.
SIGNS ARE RIGHT HEMISPHERIC IN THEIR STORAGE/PROCESSING WHILE WORDS
ARE
LEFT HEMISPHERIC. THIS INDICATES WEAK CONNECTIONS BETWEEN THE
TWO
HEMISPHERES, AND PERHAPS A LACK OF SYNCHRONY IN THE RHYTHM OF THE TWO
HEMISPHERES.
>
> She doesn't appear to understand about "sets of" either when we discuss
multiplication.
>
THIS AGAIN IS A VISUAL-SPATIAL/CONCEPTUAL FUNCTION.
> Her teacher says all this is not normal for children of her age and
ability.
HER TEACHER IS CORRECT. MOST CHILDREN BY THE AGE OF 7 HAVE THESE
FUNCTIONS
OPERATIVE.
>
> What has thrown me, however, is that this evening she answered some
3xtable (also 2x) questions and I didn't even know she knew them.
>
SHE MAY HAVE TRIGGERED THE ROTE MEMORY ASPECT OF HER LEFT HEMISPHERE,
OR
MAY HAVE BEEN RECENTLY ENGAGED IN A MUSICAL OR RHYTHMIC ACTIVITY THAT
PRODDED THE INTEGRATION OF THE TWO HEMISPHERES.
> Apert Syndrome is characterised by premature (in utero) fusion of
skull
bones, fusion of fingers and fusion of toes, all of which have to be
surgically reconstructed. Amy also has shoulder restriction and
monovision. There is a query on the presence or partial absence
of her
corpus callosum, and hopefully we will be able to obtain better information
on this after another CT scan later this year.
THANK YOU. I HAD HEARD OF APERT SYNDROME, BUT WAS UNAWARE OF THE
DETAILS
OF THE SYNDROME. FROM WHAT YOU KNOW OF AMY'S DEVELOPMENTAL DIFFERENCES,
SHE HAS AN UNUSUAL SENSE OF BODY IN SPACE, NO BINOCULAR VISION, AND
WEAK
INTERHEMISPHERIC CONNECTIONS. ALL OF WHICH ARE REFLECTED IN MY COMMENTS
ABOVE (WRITTEN BEFORE I REACHED THIS POINT IN YOUR LETTER).
>
> I am wondering whether this is just a fairly typical 7+1/2yr old
block
(though her teacher doesn't think so) or whether it is a result of
the
(possible) disruption of her corpus callosum.
IT IS NOT FAIRLY TYPICAL. IT IS A RESULT OF AMY'S UNIQUE DEVELOPMENT.
>Is it possible for such a disruption to cause a child not to be able
to
retain information one day but access that information another day?
>
YES, THIS IS QUITE POSSIBLE. SOMETHING JOGS THE MEMORY, COORDINATES
BETWEEN THE TWO HEMISPHERES. AGAIN, SOMETIMES THIS IS MUSIC OR
RHYTHM,
OCCASIONALLY IT CAN ACTUALLY BE CERTAIN AROMAS.
> Sorry if this sounds confused but I have just spent the last hour
going
through your web page and it is getting rather late and my head knows
it!
Is there anything in the information I have provided that rings a bell
for
you? Brain Gym is the only thing I can think of that might help
her.
YOUR LETTER ACTUALLY WAS QUITE COHERENT, ANN. AND YES,
BRAIN GYM MAY
OFFER A SLIGHT BIT OF HELP. IT SOUNDS TO ME AS IF AMY WOULD BENEFIT
FROM A
CUSTOMIZED HANDLE PROGRAM THAT WOULD TAKE INTO ACCOUNT MANY ASPECTS,
AMONG
THEM (1) REHABILITATIVE ACTIVITIES TO ADDRESS THE ISSUES I NOTED ABOVE
AT
THE RIGHT LEVEL FOR AMY TO BUILD A FIRM FOUNDATION, (2) COMPENSATORY
MEASURES FOR INTERIM LEARNING OF MATHS AND ART, ETC., (3) POSSIBLE
NUTRITIONAL DEFICITS, TOXICITY PROBLEMS, AND OTHER ISSUES OF AN AUXILIARY
AND ENVIRONMENTAL NATURE.
>
AS IS EVIDENCED BY THE FACT THAT I AM WRITING YOU FROM LONDON, AND
WILL BE
IN MALAGA FOR A WEEK LATER IN SEPTEMBER, HANDLE DOES CONDUCT TRAVELING
CLINICS. I WOULD BE HAPPY TO SOME TO NEW ZEALAND TO HELP, ASSUMING
THAT WE
HAVE SEVERAL CLIENTS WHO WANT TO BE SEEN, AND A LITTLE LOCAL HELP TO
LOCATE
THE PROPER ACCOMMODATIONS IN AUCKLAND. IF I WERE TO COME, I WOULD
ALSO BE
DELIGHTED TO MAKE A PRESENTATION TO THE PUBLIC (PERHAPS WITH EMPHASIS
ON
THE TEACHERS AND SOME OF THE REHABILITATION THERAPISTS) AT AMY'S SCHOOL
OR
ANOTHER FACILITY THAT WOULD BE APPROPRIATE FOR SUCH AN EVENT.
I HOPE THIS HAS BEEN HELPFUL. IF YOU WISH TO CONSIDER A VISIT
BY MYSELF
DURING A TRAVELING CLINIC, PLEASE CONTACT OUR CLIENT AND COMMUNITY
LIAISON
FOR OFF-SITE PROGRAMS, ANN BROWNLEE. ANN CAN BE REACHED AT Cb5870@aol.com
AND I HAVE Cc-ED HER A COPY OF THIS LETTER, SO IF YOU DO WRITE TO HER,
SHE
WILL BE AWARE OF THE ISSUES.
WHATEVER YOU DECIDE TO DO FOR AMY, I WISH YOU AND HER A SUCCESSFUL AND
ENJOYABLE VENTURE.
> Thanks for your time.
YOU ARE QUITE WELCOME.
SINCERELY,
Judith Bluestone
Educational & Clinical Director
The HANDLE Institute
(206) 285-5498 Fax: (206) 285-3228
>
> Regards
> Ann
=========================================================================
Date: Sun, 30 Aug 1998
22:08:26 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Yonstein@AOL.COM
Subject: Re: fusion of cervical vertebrae?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello Ann:
The website is Family village. It's www.familyvillage.wisc.edu.
Click on
Library, then specific diagnoses, then the drawer for A-B and find
Apert.
Then under Learn More and then click on Article from OMIM.
Have you ever heard of that?
Hope all is well.
Janine
=========================================================================
Date: Sun, 30 Aug 1998
22:18:29 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Yonstein@AOL.COM
Subject: Re: HANDLE
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Ann:
That is very interesting reading. I will have to check out the
handle site
when I have an extra hour or so myself.
Thanks,
Janine
=========================================================================
Date: Sun, 30 Aug 1998
22:06:32 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Richard Tait
<rjrtait@MARS.ARK.COM>
Subject: cervical fusion
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Janine!
I must say that again it has been some time since I have been free
to read
or answer any emails.
As others are moving, we are doing major renovations to our house;
feels
like new construction around here.
Anyway, you asked if anyone else had cervical fusion; Julia does.
With C5 &
C6 affected though, it does very little to change a "normal" lifestyle
for
these kids. It would be far worse it the fusion was lower or
higher. So
far Julia hasn't been affected at all.
Hope it helps,
Rene and the gang
=========================================================================
Date: Mon, 31 Aug 1998
17:12:39 +1000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ANGELIQUE PEZZIMENTI
<ANGELIQ@BIGPOND.COM>
Subject: aperts
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0009_01BDD502.8ED33860"
This is a multi-part message in MIME format.
------=_NextPart_000_0009_01BDD502.8ED33860
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
hello everybody just want to ask a question when your children with
=
apert go to school do they cope alright or are they teased .this
is my =
worst fear i dont want anyone to hurt my little one i know that other
=
children can be very cruel.
angelique
------=_NextPart_000_0009_01BDD502.8ED33860
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>hello everybody just want
to ask a =
question when=20
your children with apert go to school do they cope alright
or are =
they=20
teased .this is my worst fear i dont want anyone to hurt my little
one i =
know=20
that other children can be very cruel.</FONT></DIV>
<DIV><FONT color=3D#000000=20
size=3D2> &nbs=
p;  =
; =20
angelique</FONT></DIV></BODY></HTML>
------=_NextPart_000_0009_01BDD502.8ED33860--
=========================================================================
Date: Mon, 31 Aug 1998
09:00:41 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Firefli007@AOL.COM
Subject: Re: aperts
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello,
Being one who has suffered the taunts of of cruel children.and adults
for that
matter.. yeah it is painful.... However the friends I made in school
and in
adulthood are the gems of life that help you keep on "Keeping
on" No matter
where you send your kid there will always be some unkind word or stare...
I
still get them and im 31 but i have learned the value of my own
self worth...
They don't determine how I feel about ME I do.
It is vital to surround your child with love and support but at the
same time
they have to learn that not everyone in this world will be kind. They
have to
know how to "pick themselves up dust themselves off and start all over
again!
They have to learn that the people who love them are the ones to pay
attention
to and learn from. They have to know the value of the phrase
"don't let the
Turkeys get you down!"
They have to know where to find that support... thoriugh things like
this
listserv, through good friends and through family!!
Hangin in there in savannah Ga
jenny... yes i still owe you guys pictures!! Hurricane Bonnie
stress has held
me up!! :-)
=========================================================================
Date: Mon, 31 Aug 1998
18:45:32 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: NephiRose@AOL.COM
Subject: tissue expansion
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hey guys,
I've been hanging around. I don't usually say anything until something
pertinent hits me :) I have a couple questions regarding tissue
expansion. I
want to make sure I got it right. Sarah V. (Utah) had hand surgery
last month
using skin graft. During that time I noticed some discussion
regarding
tissue expansion with EvaJessie and others. EvaJessie was in
her cheek (?)
and there was another one who had one and it was in the hand.
The hand is the
one I want to focus on....I need more details. When I mentioned
tissue
expansion for the next surgery in the hands to Dr. Garramone, all I
got was a
puzzled expression (yikes). He wanted more information.
1) Where was it done? And by whom?
2) Was in the hands of an apert child?
3) Is a situation of tissue expasion vs. skin grafting?
Or was it for
another reason?
4.) If it is as in question # 3, does tissue expansion necessarily
have less
scarring?
5.) In terms of pain, which would be greater?
I think that is all the questions I have. Any input would be great.
I plan
on giving the results of this to my doctor. Sarah V.'s next surgery
will be
six months from now to separate the ring and middle finger on both
hands.
Belinda Vicars
=========================================================================
Date: Mon, 31 Aug 1998
21:17:42 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Yonstein@AOL.COM
Subject: Re: tissue expansion
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hey everyone.
I also have a question about skin grafting, tissue expansion, etc.
Has anyone heard of actually growing the skin from cells to be used
instead of
skin grafting? A relative was telling me about this procedure
being used she
thought in Boston on a girl who was severely burned.
Any info would be greatly appreciated.
Janine
=========================================================================
Date: Mon, 31 Aug 1998
21:56:57 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: NephiRose@AOL.COM
Subject: Re: tissue expansion
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
yeah...I want to know about growing skin tissue from cells too.
Amazing! I
really want to cut down on the scarring tissue as much as possible.
Belinda
=========================================================================
Date: Tue, 1 Sep 1998
14:29:31 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: aperts
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Angelique
re teasing, there are going to be some kids that tease and others that will protect, you just can't get away from it. However, you will probably find the children in her first year will be more curious than unkind. Giving her the words to use when other children ask questions is the most empowering thing you can do.
I used to go up at lunchtimes and rescue Amy from those that used to crowd around her wondering why she was different, as she wouldn't use her voice, she would just retreat into herself. I did that for a while then told her she had to handle it herself and would only go up periodically and without giving her prior warning, as otherwise she would wait for me and not try to play with the children. Eventually they got used to her and apart from the occasional child now asking me what is "wrong" with her hands or face it is not an issue (2 years into schooling). She is still inclined to wander around on her own some days but that is more her choice than others leaving her out.
I recommend you arrange with the school for her to have a "safe place" she can go to when things get a bit much for her. Amy was allowed to go into the book corner of her class during lunch breaks (usually not allowed) and I encouraged her to go to the library (her favourite hidey-hole). Her favourite coping tactic is to walk around with the duty teacher.
Though recognising it is a tough time for them getting past those first few weeks, it can also be tough on the parents (usually Mum), so take it gently.
Good luck
Ann
NZ
=========================================================================
Date: Tue, 1 Sep 1998
14:29:59 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Ultrasounds
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Greetings
Early August Karen Foster asked "What I was thinking about was the fact that he had heart defects which included two holes in his heart. Should the Ultrasounds have picked up these defects?"
Our Genetic Counsellor has searched this for us and the following are from abstracts of papers identified in a Medline search. Incidently, the sonographers at our main women's hospital say that NZ's accuracy rate is around 15%. That leaves a heck of a lot of unidentified defects and it would be interesting to compare it with overseas figures.
A specialist from the UK was being interviewed on the radio on Saturday (unfortunately we were out at the time and I couldn't listen to it all) and she was saying one of the problems is that this type of technology is improving at a rapid rate, and you cannot make comparisons because by the time you have the experience the technology has changed. I don't know how valid that is.
Regards,
Ann
NZ
Prenatal diagnosis of congenital heart disease
by U Gembruch
Owing to the widely different levels of experience of examiners, there
is a large discrepancy in study results of second trimester ultrasound
screening for fetal malformations, which is a result of varying levels
of obstetric scanning expertise prevalent at the reporting centre.
This holds particularly true for the prenatal diagnosis of congenital heart
disease where detection rates ranging from 0 per cent to 60 per cent are
being reported. On the other hand, congenital heart disease affects
about 4-8 per 1000 live births and is a leading cause of infant mortality,
whereas prenatal diagnosis could possibly prevent death and long-term morbidity
in some of those neonates., etc,
Advances in fetal echocardiography by N A Ayres
....Referrals for fetal echocardiography are determined by fetal, maternal,
or familial risk factors; however, approximately 50% of neonates diagnosed
with a congenital cardiac defect have no risk factor, and most have undergone
an obstetrical ultrasound during the pregnancy that did not detect a cardiac
defect. ....
Accuracy of routine ultrasonography in screening heart disease prenatally
by T Todros, et al
The aim of the present study was to assess the accuracy of the four-chamber
view as a screening test for detection of congenital heart disease prenatally
in a low-risk population .... Follow-up of the babies until discharge from
the hospital was obtained. 11,232 sonograms were performed on 8299
pregnancies. Cardiac malformations were diagnosed in 40 newborns
(4.8/1000). Six of them (15 per cent) had been recognised in utero.
.... Although the sensitivity is low, it would be nil if the test were
not performed. Moreover, it will probably increase with better training
of the operators and by extening the examination to the ventriculo-arterial
connections.
Efficacy of fetal echocardiography and yield by risk category
by E Buskens et al
.... Follow-up was available in 3223 cases (99%). .... In total,
20 of 47 cases of cardiac malformations were detected (sensitivity 43%).
When taking into account cases that remained undetected because of unfavourable
scanning conditions (ie, minute size of the anomaly, awkward fetal position,
or severe maternal obesity), the sensitivity for congenital heart disease
rose to 51%. ... Fetal echocardiography for known increased risk appears
to be moderately effective. ....
Increased nuchal translucency at 10-14 weeks of gestation as a marker
for major cardiac defects, JA Hyett et al
...This study reports the prevalence of cardiac defects in 1427 chromosomally
normal fetuses with increased nuchal translucency thickness, and examines
the potential value of this sonographic marker in screening for major cardiac
defects .... The prevalence of major cardiac defects was 17 per 1000 ....
These findings suggest that measurement of nuchal translucency thickness
at 10-14 weeks may prove to be a useful method of screening for abnormalities
of the heart and great arteries in addition to its role in screening for
chromosomal defects.
Detecting fetal abnormalities by R Williamson
Three per cent of infants suffer from birth defects, (mostly genetic)
including single gene diseases, such as cystic fibrosis or thalassaemia;
chromosomal aneuploidies such as Down syndrome; or multifactorial conditions
such as spina bifida and congenital heart defects. .... This article
looks at ante natal diagnosis early in pregnancy and review what progress
is to be expected in this field during the coming decade.
First-trimester transabdominal fetal echocardiography by J S Carvalho
et al
.... Transabdominal fetal echocardiography in the first trimester of
pregnancy is feasible. In most patients the resolution of images
is sufficient to allow assessment of basic cardiac anatomy, when normal,
or detection of complex malformations, when present. ...
Sonographic screening to detect fetal cardiac anomalies: a 5-year experience
with 111 abnormal cases by J S Kirk et al
... The sensitivity of sonographic screening to detect fetal cardiac
anomalies varies with the type of lesion. Isolated septal defects
are the most difficult lesions to detect.