Ann,
Don't know anything about this particular surgeon but the Hospital
see a huge
number of craniofacial cases. Our pediatric ophthalmologist (who is
wonderful!!!!) did her fellowship there and is so very comfortable
with Apert-
has treated a great meny kids with the syndrome so she is very comfortable
with the issues of "difference" vs "pathology". She related to us how
she
showed up for her interview on the appointed day and the staff was
apologizing
that all she would see that day were cranio cases- not the variety
of patients
she could expect to treat in a pediatric ophtho fellowship. When she
asked how
often that happened (thinking it must be only a couple of times a year)
they
stated..."every 2 weeks". The point being that they see very
many cases of
Apert and Crouzon...this surgeon should at least have had the opportunity
to
treat many cases.
The craniofacial surgeon here at Stanford University is quite a proponent
of
distraction. Uses it often and has had good results.
Marianne
San Carlos (it's finally summer weather!!), Calif
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Date: Wed, 8 Jul 1998
03:54:13 EDT
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From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: holidays
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In a message dated 7/5/1998 3:38:23 PM Pacific Daylight Time,
rjrtait@MARS.ARK.COM writes:
<< She had a really busy day that day, so I know that she can
do better when she sets her mind to it, but she is very strong
willed, &
didn't feel like playing the games that needed to be played for
the testing.
>>
This sure sounds familiar....we attribute it to "normal 2-year-old behavior".
Evan recently had his IFSP for the infant program,even though he has
only been
in it for 6 weeks- they try to get it on a birthday and 6 mo schedule.
It was
absolutely amazing to see his progress but the therapists and teacher
all came
to the relization that the best thing to do was just follow him around
and see
what he does ...if you try to push him he goes into the 2 yr old "NO"
mode!!
Glad this is a somewhat universal experience!!
Marianne
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From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: teeth
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In a message dated 7/5/1998 10:03:48 PM Pacific Daylight Time,
Nodrmat26@AOL.COM writes:
<< My question about teeth is that Zoey is 17 months old and still
has not one
tooth yet. Anyone had that experience.
>>
Ditto! And we have friends who have an adopted daughter without
a
craniofacial syndrome who was toothless until 18 months...everything
else
being normal. Also, Evan got his upper central incisors first, before
the
lowers...fairly unusual. One of his nurses told us of an old pittsburgh
tradition that the person who finds the first tooth has to buy the
first pair
of walking shoes. Figured with as long as it was taking we'd be in
Nike's ;)
Marianne
just got his lower bicuspids at 2.
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From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: Sleep Studies
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Sounds like gastro-esophageal reflux. Did she spit up much as an infant?
Does
she eat just before she goes to bed? Ever get heartburn? You
might try
putting 4" (8 cm??) blocks under the head of her bed, feed her more
meals but
lighter ones, and not feed her for 2 hours before bedtime. Also caffeine
makes
it worse. H2 blocker medications like Tagamet (cimetidine) or
Zantac(ranitidine) or Pepcid (famotidine) can also help if that is
the cause.
Marianne
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Date: Wed, 8 Jul 1998
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From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: Craniofacial Program
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In a message dated 7/7/1998 6:58:31 PM Pacific Daylight Time, Thornq@AOL.COM
writes:
<< I think he is upset because Andrew wants me all to
himself. Now does that make sense to alot of you?
>>
This happened to us with our eldest who is now 7 1/2. I guess the subsequent
kids were just used to sharing. We tried including her in hugs, etc
and after
a short time she got over it.
Marianne
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Date: Wed, 8 Jul 1998
21:05:55 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Plastic Surgeons
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Hi Marianne
Thanks for your information about the hospital, I am sure that will be reassuring to the family concerned. I will pass it on to them.
The hospital we go to has craniofacial/plastic clinics once every three weeks, so there is no comparison in opportunity for the surgeons to gain experience, but at least we can say they get a wide variety of cases!
Cheers,
Ann
NZ
At 03:46 AM 8/07/98 EDT, you wrote:
When she asked how
>often that happened (thinking it must be only a couple of times a
year) they
>stated..."every 2 weeks". The point being that they see very
many cases of
>Apert and Crouzon...this surgeon should at least have had the opportunity
to
>treat many cases.
>
=========================================================================
Date: Wed, 8 Jul 1998
21:13:17 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: AboutFace Resource Sheets
Mime-Version: 1.0
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--=====================_899957316==_
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Kia Ora
Some weeks back Joe and Anne Zaengle asked about preparing their child for surgery. We have recently received some resource sheets from AboutFace and I have scanned the ones dealing with surgery and school. Copies attached for those interested. They do have others and all you have to do is write/phone/fax/email and ask. Their website is www.interlog.com/~abtface
Cheers,
Ann
NZ
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Date: Wed, 8 Jul 1998
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Various
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Well done Karen! Three cheers for "Parent Power"!!
And all the best for Billy's upcoming surgery. We haven't heard of the testicular problem with any other boys with Apert - but then as we have a daughter maybe noone has thought to mention it. However, we do know of boys it has occurred with who have had other syndromes. Probably just one of those things that can happen with any male child.
Ann
NZ
>I am happy to say that we will be getting Billy's PT back to work with
him
>in the next week or so. It seems alot of people were just as upset
as we
>were that she was let go and we made our thoughts known. And thanks
to our
>assistant administrator of our MHMR they are going to contract her
privately
>for the kids she has been working with and want her to continue to
do so. He
>will still be in the Early Intervention program for other needs. It
seems
>that these wonderful people do want what is best for our children.
>
>Billy will be having his next surgery the second week of Augt to release
his
>pointer fingers and surgery to bring down his testicles in place because
>they have not dropped down on their own. Has anyone else had this
problem
>with their sons? I know that is personal but I was wondering if this
is
>common or not. Anyway that is whats next for our guy and as always
I ask for
>everyone to pray for him.
>
>Thanks
>Karen(PA)
>
>
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Date: Wed, 8 Jul 1998
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: allergies
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Jordan had a swallow study when he was first born...basically a speech
pathologist fed him a bottle w/ a dye in it. then as he drank his bottle
they
watched..basically a glorified x-ray.....to see if everything was going
as
should...luckly it was.
Fortunately, its a painless procedure!!
Jenn(Tampa/St. Pete...where we have FINALLY gotten some rain!!!!!!!!!!!!!
:)
:) )
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Date: Wed, 8 Jul 1998
09:52:05 -0400
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From: Christopher Kilner
<Christopher.Kilner@USPTO.GOV>
Subject: Kilner family reply
MIME-Version: 1.0
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Hello to everyone from the Kilners. We still monitor the Listserv to
see
if their are any questions we can help with.
Dear Laurie,
Thank you for the beautiful
poem. It is heartwarming to know
that we are still in your thoughts and prayers.
We are doing about as well as can be expected. Just as Mother's
Day was
so hard for Reggie, the week before Father's Day was particularly
difficult for me. But that weekend Blair and I went "camping" in my
parent's back yard with my brother, his three little boys, and two
other
nephews - and we had a fantastic time - an "adventure" in Blair's words.
It helped ease some of the pain and sorrow.
Not a day goes by without at least a few tears for our Ceci. We
think
about her constantly. Blair has pretty much stopped asking "when
is
Ceci coming back down?" - he now understands that she can't come back.
Instead, he tells us that he misses his sister - usually at the most
absolutely appropriate times. This past Sunday we tried a church
near
the cemetery that had a nursery. Blair told one of the caregivers
so
much about his sister Ceci that she asked us where Ceci was when we
came
to pick him up.
Reggie and I have our good days and our bad days, but we know that we
have our own special little angel looking after us. Our families
and
friends have also been tremendously supportive.
Reggie is working part time so she can spend even more time with Blair.
She is doing a great job of taking care of everything while I have
been
studying for the bar exam (less than 3 weeks away) and we are planning
on a nice vacation in August. I'll also spend some time to update
the
web page and move it off of the University's server.
We are considering setting up a trust with the college money we saved
for Ceci. If we continue to contribute until Blair goes to college
and
hold onto it until Blair's children (and Ceci's cousin's children)
are
ready for college (2040), we should have a few million dollars to help
the next generation go to college and learn about Ceci.
All of you and your little ones are in our prayers,
Chris, Reggie, and Blair Kilner
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Chris,
Thanx for the update, please know ya'll are in our thoughts...always
Jennifer Graham
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Date: Wed, 8 Jul 1998
14:04:39 -0700
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From: Penny Halverson
<phalvers@U.WASHINGTON.EDU>
Subject: Chat Night, Wed. 7/8 (fwd)
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII
Hiya! Tonight is chat night, and you know what that means!
6:30pm - 9:30pm Pacific Time / 7:30pm - 10:30pm Mountain Time /
8:30pm - 11:30pm Central Time / 9:30pm - 12:30pm Eastern Time /.
You can drop in at any time during the three hours above.
Date to Meet On: Wednesday, July 8th
IRC Server: please use "ChatNet" from any locations listed under that.
Port Setting: 6667
Channel Name: #apertcrouzon or if noone's there, go to #widesmiles
For Windows 3.x (16 bits) and Windows 95 (32 bits) users:
Please choose any location near you and download at:
http://www.mirc.co.uk/get.html
If you are having problem, try the ChatNet Information at:
http://chatnet.org/
For MAC Users: Please download IRCle at:
http://www.amug.org/~ircle/
Hope to see you there!
Hugs, Penny ;-)
mailto:phalvers@u.washington.edu
mailto:hwy2heaven@kendra.com
mailto:penny@crouzon.org
http://www.crouzon.org/
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Date: Wed, 8 Jul 1998
22:29:58 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: TEETH
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Hello all:
My reply to the teeth issue is this> Nicholas didn't get his first
tooth
until he was 13 months old, which I thought was a little bit late for
him.
Now Emily, almost 1 year old, hasn't gotten any teeth yet. From
reading all
your mail, I guess I shouldn't expect any for a couple of months, huh?
Sorry to hear about the pneumonia. Hope Jacob is feeling better
soon. Good
luck with the sleep study.
Hope everyone else is well.
Best wishes,
Janine
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Date: Thu, 9 Jul 1998
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From: Penny Halverson
<phalvers@U.WASHINGTON.EDU>
Subject: Re: Plastic Surgeons
Comments: To: howrdnan@ihug.co.nz
MIME-Version: 1.0
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Hi Ann
Is there any way you can find out about the parent of the little
girl with Crouzon's you can get in contact with that you mentioned
about? If you can, I would like to get in touch
with them or
you can let them as we have a support network for families and
individuals with Crouzon's. Please let me know.
Hugs, Penny ;-)
mailto:phalvers@u.washington.edu
mailto:hwy2heaven@kendra.com
mailto:penny@crouzon.org
http://www.crouzon.org/
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Date: Thu, 9 Jul 1998
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From: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: risk factors
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I have read in several articles about the lack of information about
the causes
of Aperts. In a way, to me, it doesn't really matter anymore;
but I was
always curious about the statement that a high paternal age is associated
with
Aperts. My husband was 29 when Tim was born. I am wondering
about what the
folks on this mailing list feel about this comment. Have you
read this as
well?
Beth Tolson
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Date: Thu, 9 Jul 1998
18:48:56 -0400
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From: foster <foster@ICONTECH.COM>
Subject: Re: Various
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>Well done Karen! Three cheers for "Parent Power"!!
>
>And all the best for Billy's upcoming surgery. We haven't heard
of the
testicular problem with any other boys with Apert - but then as we
have a
daughter maybe noone has thought to mention it. However, we do
know of boys
it has occurred with who have had other syndromes. Probably just
one of
those things that can happen with any male child.
>
>Ann
>NZ
>
>>I am happy to say that we will be getting Billy's PT back to work
with him
>>in the next week or so. It seems alot of people were just as upset
as we
>>were that she was let go and we made our thoughts known. And thanks
to our
>>assistant administrator of our MHMR they are going to contract her
privately
>>for the kids she has been working with and want her to continue to
do so. He
>>will still be in the Early Intervention program for other needs.
It seems
>>that these wonderful people do want what is best for our children.
>>
>>Billy will be having his next surgery the second week of Augt to
release his
>>pointer fingers and surgery to bring down his testicles in place
because
>>they have not dropped down on their own. Has anyone else had this
problem
>>with their sons? I know that is personal but I was wondering if this
is
>>common or not. Anyway that is whats next for our guy and as always
I ask for
>>everyone to pray for him.
>>
>>Thanks
>>Karen(PA)
>>
>>
>
>Ann,
Billy will be having his surgery on the 13th of August and we are hoping
that we are getting close to the end of the surgeries for a year or
two. I
know that he will be having one more hand surgery after this and then
a
break. That will be great to just be able to enjoy wathching him grow
for a
while without thinking about the next month or two months having to
do it
again. We are all doing pretty well and the kids are enjoying their
summer
so far.We have decided to not get a pool this year and have instead
purchased a 14 foot trampoline. It is a big hit and every kid on our
block
has been knocking on the door to try it out. I know that it can be
dangerous
if your not careful but we always supervise when the younger ones are
on it
and the older girls never go on without a spotter to watch. It is locked
up
to our swing set at night so no one can come on it at night. Billy's
PT even
works with him on it a little and she loves it. Billy is not sure yet
if he
likes it or not.
How is the family doing? I think time is just flying by and soon the
kido's
will be going back to school. This year Kaila will be starting pre-school
and that makes me a little sad. She is so good with Billy and it will
be
very strange not to have her here even though it is only for half a
day.
I was wondering how old Amy was when she started talking and walking?
Billy
still only makes a few sounds and is walking holding on. He does seem
to get
upset sometimes that we don't know what he wants and he just kind of
grunts
a lot and this has me a little worried.
Tell Howard and Amy that I said hi and stay well.
Karen(PA)
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Date: Thu, 9 Jul 1998
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From: Tim and Carol
Graves <twg@HIWAAY.NET>
Organization: home
Subject: Re: risk factors
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Beth,
I too have heard and read that, My husband was only 30 when Nick was
born...
Carol Graves
Beth Tolson wrote:
> I have read in several articles about the lack of information about
the causes
> of Aperts. In a way, to me, it doesn't really matter anymore;
but I was
> always curious about the statement that a high paternal age is associated
with
> Aperts. My husband was 29 when Tim was born. I am wondering
about what the
> folks on this mailing list feel about this comment. Have you
read this as
> well?
>
> Beth Tolson
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Date: Thu, 9 Jul 1998
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From: "Pulido, Laura"
<PulidoL@OR.CSMC.EDU>
Subject: Risk Factors - Paternal Age
MIME-Version: 1.0
Content-Type: text/plain
Hello Beth and everyone!
When Martha was born (1/12/97) I was 27 and her dad was 37.
I don't
think 37 is old "for a man". I've also noticed that a lot of
the
fathers on this list aren't "advanced in age". The Genetics Doc
also
told us age was a factor. I think Apert Syndrome has to be studied
more.
Laura
Los Angeles, California
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Date: Thu, 9 Jul 1998
21:19:11 EDT
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From: Claudia Mastellone
<JReyesmich@AOL.COM>
Subject: Re: Risk Factors - Paternal
Age
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Hello everyone
About age, when Vivi(my sister) was born (10-22-82) my mom was 31 and
my
father was 53.I know it's a big difference.The genetic doctors told
my parents
the age was a factor too.
Claudia
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From: Christina Mathis
<Nodrmat26@AOL.COM>
Subject: Re: risk factors
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In a message dated 98-07-09 17:46:07 EDT, you write:
<< I have read in several articles about the lack of information
about the
causes
of Aperts. In a way, to me, it doesn't really matter anymore;
but I was
always curious about the statement that a high paternal age is
associated
with
Aperts. >>
Zoey's Mom, Christina here and I've never heard anything like that.
Zoey's
genetisist did tell me that the chromosome 10 mutation (for lack of
a better
word) has never (to his knowledge and research) been found in women,
it's
always found in the men...he didn't say anything about age, so I don't
about
that. I admit that I haven't done much research myself, but now
that i've got
this neat computer, I shall start.
My two cents worth,
Christina
Sunny San Antonio
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Date: Thu, 9 Jul 1998
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: risk factors
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Beth,
I have never heard of that. I have heard about the older age in
women though.
Andrew's geneticist has mentioned that, but she also said that the
older you
are more risks there are anyway. Maybe not just Apert.
I don't know how they
can say something like that when they do not really know all the specifics
of
it. I understand they know the gene, but they do not know the
chromosomes (or
whatever). As Andrew's geneticist also says, the genes are like
the tree
trunk and they just don't know anything about the branches and the
leaves. I
hope that makes sense.
That is my 2 cents.
Lynn
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Date: Thu, 9 Jul 1998
23:17:48 EDT
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From: Lynn Thornquist
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Subject: Re: risk factors
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One more thing, Beth!
My husband, Rich, was also 29 when Andrew was born. So there blows
most of
that theory.
Lynn
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Date: Fri, 10 Jul 1998
00:31:32 -0400
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From: foster <foster@ICONTECH.COM>
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Sorry about sending my letter to Ann over the listserver. I have been
having
trouble with my computer and I ment to send it to her. I hope no one
is
upset with me for it.
Thanks
Karen(PA)
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Date: Fri, 10 Jul 1998
00:33:36 -0400
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From: foster <foster@ICONTECH.COM>
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Beth,
I also have read that the age was a factor. Also have read that it is
the
father that is responsible and that it is not related to any of these
things. I think it is not anyones falt. The genetisist told us that
it is
not age or the fathers falt it is unpredictable unless one or
both of the
parents have Apert's. If a grownup has Apert's and has a child there
is a
fifty percent chance that the child will have Apert's. That is the
only
thing that is for certain. I was forty when Billy was born and felt
that was
the reason, but I no longer believe that after reading and listening
to
others. After all there are parents of all ages on this sever. I just
think
that god decides who will get these great kids and he makes sure that
he
picks a loving family of any age that he can trust to make these kids
the
best they can be so lucky us.
Karen(PA)
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Date: Fri, 10 Jul 1998
00:19:46 -0400
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From: foster <foster@ICONTECH.COM>
Subject: Sorry
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Sorry for sending my letter to Ann by mistake to the sever. I don't
know
what I was thinking please forgive me.
Karen(PA)
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Date: Fri, 10 Jul 1998
02:35:31 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: risk factors
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> I have read in several articles about the lack of information about
the causes
> of Aperts. In a way, to me, it doesn't really matter anymore;
but I was
> always curious about the statement that a high paternal age is associated
with
> Aperts. My husband was 29 when Tim was born. I am wondering
about what the
> folks on this mailing list feel about this comment. Have you
read this as
> well?
Statistics are funny things......the incidence
(percentage) of
chromosomal anomalies increases with increasing parental age -- all
anomalies. However, the birth rate drops sharply, so the largest
NUMBER of chromosomal anomalies will always be in the group with the
highest birth rate -- generally folks between 20 & 30, although
that may be increasing a little. I've seen lots of babies with
Down
Syndrome (only a few with Apert) -- the vast majority of the parents
of the DS kids were under 30 when they had that baby. I remember
a
few with other chromosomal anomalies whose parents were in their
40's, but very few.
Judy G.
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Date: Fri, 10 Jul 1998
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: risk factors
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Kia Ora Beth
This is reported in the American Journal of Medical Genetics 72:394-398 (1997) "Birth Prevalence, Mutation Rate, Sex Ratio, Parents' Age, and Ethnicity in Apert Syndrome" by Marie M. Tolarova, John A Harris, Doris E Ordway and Karin Vargervik, Center for Craniofacial Anomalies, Department of Growth and Development, University of California
Both Abstract and summary are rather longer than I have time to type out here, and are rather technical, however here is some of the bit re age:
"... for all cases, the mean age of mothers was 28.9+/-6.0 years, and
of fathers was 34.1+/-6.2 years. Almost half of fathers were older
than 35 years when the child was born; for more than 20% of cases, both
parents were older than 35 years. These findings may support the
view that point mutations appear to be more commonly associated with paternal
than with maternal alleles. Representing the largest systematically
ascertained population-based study of Apert syndrome to date, they provide
a reliable basis for genetic counseling and decision-making, and for focused
research to define the cause of this syndrome."
Personally I gain some amusement from this as Howard is 5 years younger than me and I was two months off my 40th when Amy was born! We certainly aren't fussed about this study - my personal belief is that H and I just shouldn't have tried to have children, as none of my other 7 pregnancies carried past the first three months and both our families have clear production histories. Ah well, we can't be perfect in everything! :-)
The reality is that the chances of having a child with ANY "difference" is a heck of a lot higher than having a child with Apert - and if Amy had to have anything then we have been lucky.
Cheers
Ann
NZ
At 05:45 PM 9/07/98 EDT, you wrote:
>I have read in several articles about the lack of information about
the causes
>of Aperts. In a way, to me, it doesn't really matter anymore;
but I was
>always curious about the statement that a high paternal age is associated
with
>Aperts. My husband was 29 when Tim was born. I am wondering
about what the
>folks on this mailing list feel about this comment. Have you
read this as
>well?
>
>Beth Tolson
>
>
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Date: Fri, 10 Jul 1998
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From: Jennifer Graham
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Subject: Re: risk factors
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Well, I think the age issue can is rather invalid....My husband and
I were
both 26 last year when Jordan was born...so..............
Jenn(Tampa/St. Pete)
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From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: risk factors
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Helo Beth, I have never read about this, but my husband was 32
when
Alba was born.
Elizabeth
Beth Tolson wrote:
> I have read in several articles about the lack of information about
> the causes
> of Aperts. In a way, to me, it doesn't really matter anymore;
but I
> was
> always curious about the statement that a high paternal age is
> associated with
> Aperts. My husband was 29 when Tim was born. I am wondering
about
> what the
> folks on this mailing list feel about this comment. Have you
read
> this as
> well?
>
> Beth Tolson
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Date: Fri, 10 Jul 1998
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: risk factors
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We have also read about high paternal age being a factor in Aperts.
However, I don't believe they mean 29...or even 39 for that matter.
The
article Mike and I read referred to fathers in the 50-60 range (sorry,
can't recall where we read this) I think the fact that there
are fathers
and mothers of all ages on this listserver should support the fact
that the
research in this area is not quite complete?????
Robin Hill
----------
> From: Beth Tolson <ETolson643@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: risk factors
> Date: Thursday, July 09, 1998 5:45 PM
>
> I have read in several articles about the lack of information about
the
causes
> of Aperts. In a way, to me, it doesn't really matter anymore;
but I was
> always curious about the statement that a high paternal age is associated
with
> Aperts. My husband was 29 when Tim was born. I am wondering
about what
the
> folks on this mailing list feel about this comment. Have you
read this
as
> well?
>
> Beth Tolson
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Date: Fri, 10 Jul 1998
11:09:29 -0400
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From: Christopher Kilner
<Christopher.Kilner@USPTO.GOV>
Subject: Re: risk factors
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It has been awhile since I read the material, but spontaneous Aperts
(unaffected parents) is autosomal dominant which means it comes from
the
father's genes and high paternal age (>60 or 70) was the only known
risk
factor. I, however, was only 31 when Ceci was born.
One thing that bothered me was reading an article soon after Ceci's
birth that a dietary supplement I was taking when Ceci was conceived
(Chromium Picolinate) had been shown to cause chromosomal defects in
the
ovarian cells of mice. I asked our geneticist about it but she seemed
to
discount the possibility.
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Date: Fri, 10 Jul 1998
12:39:44 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: risk factors
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Kris,
The bit about chromium IS verrrrrrry interesting, since I have taken
it on and
off for several years...both prior to Jordans birth and now after (in
hopes it
woll work some of its weight loss miracles!!!!!). I'll have to follow
up on
this...
Jenn(Tampa/St. Pete)
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Date: Fri, 10 Jul 1998
13:18:01 -0600
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: RISK FACTORS
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I have read some of the same articles about paternal age and chad and
I
came to the conclusion that it was God's will. I was 23 and chad
had just
turned 29. I know of 5 families that were under the age of 23
and their
husbands under age 25 that had an aperts child. One girl had
just turned
19 when she had her son. I think it is just a fluke mutation
that occurs
rarely and it can affect anyone. I think we will start seeing
it more in
really young couples because kids are having kids now days. Just
my input!
God Bless!
Denise Graham
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Date: Fri, 10 Jul 1998
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From: Janine Krebs
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Subject: Re: risk factors
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I also did read an article given to us by the hospital when Emily was
born
that stated possibly having to do with the paternal age of the father.
Of
course my husband was devastated at first reading of it. I was
34 and he was
40 when Emily was born. Then I said to him, look at Tony Randall.
Paternal
age doesn't get any older than him, does it? There goes that
theory.
Janine
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Date: Fri, 10 Jul 1998
14:23:45 -0700
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From: Penny Halverson
<phalvers@U.WASHINGTON.EDU>
Subject: IRC's Chat Tonite! Friday, July
10th
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial
Anomalies
<crouzon@u.washington.edu>
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Hi everyone!!!
Every weeks on Mondays and Fridays will be the same time at every chat
nights at 6:30pm - 9:30pm Pacific Time / 7:30pm - 10:30pm Mountain
Time /
8:30pm - 11:30pm Central Time / 9:30pm - 12:30pm Eastern Time /.
You can drop in at any time during the three hours above.
Date To Meet On: Friday, July 10, 1998
IRC Server: please use "ChatNet" from any locations listed under that.
Port Setting: 6667
Channel: #apertcrouzon or if noone's there, then go to #widesmiles
For Windows 3.x, Windows 95 and Windows NT users, please select
one
of the locations near you and download at:
http://www.mirc.co.uk/get.html
If you are having problem, try the ChatNet Information at:
http://chatnet.org/
For MAC Users: Please download IRCle at:
http://www.amug.org/~ircle/
Hugs, Penny
mailto:phalvers@u.washington.edu
mailto:hwy2heaven@kendra.com
mailto:penny@crouzon.org
http://www.crouzon.org/
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Date: Sat, 11 Jul 1998
16:44:00 EDT
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From: Diane Youngblood
<CoH1862@AOL.COM>
Subject: Re: Risk Factors - Paternal
Age
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When Mallory was born in 1987, genetics had no idea what factors were
involved. At Vanderbilt they had 1 page in one book about Apert's.
All they
knew was that it was a spontaneous gene mutation. I do work in surgery
and was
always exposed to x-rays and gasses that put people to sleep among
who knows
what else. As far as age, I was 35 and my husband was 33. If any one
has any
other info I would enjoy knowing about it.
Diane Youngblood
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Date: Fri, 11 Jul 1997
16:58:54 PDT
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From: Longshot &
Darwin <Darwin1@CONCENTRIC.NET>
Subject: Teeth/Shoulders
In-Reply-To: <7d55fa66.35a42b29@aol.com>
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Hello all,
I didn't have a problem with crowding
until my adult teeth came in.
My baby teeth were fine. Even when my doctor pulled 6 or more teeth,
I still had plenty. Also all I needed were braces to fix the problem,
4
years in them. Another problem were my wisdom teeth. They had
to be
cut out before they even came in. My doctor wouldn't even think about
doing any of my facial surgeries until my teeth were straight.
I don't have any restrictions in my shoulder movment. I think the more
you excersice like volleyball and swimming, activites that require
more
shoulder movement then that helps.
My 2 cents..
Rachel
darwin1@concentric.net
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Date: Sat, 11 Jul 1998
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: risk factors
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Hmmmmm! You all have me curious too! Erin was taking some
'fat burning'
or 'energy enhancing' substance near the time Brenna was conceived.
I will
have to ask him what it was - if he can remember. Very interesting.
;-)
BTW we were both under 30 when she was born.
Robyn J. Eugene, OR
At 12:39 PM 7/10/98 EDT, you wrote:
>Kris,
>
>The bit about chromium IS verrrrrrry interesting, since I have taken
it on
and
>off for several years...both prior to Jordans birth and now after
(in
hopes it
>woll work some of its weight loss miracles!!!!!). I'll have to follow
up on
>this...
>
>Jenn(Tampa/St. Pete)
>
=========================================================================
Date: Sat, 11 Jul 1998
19:38:08 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Risk Factors - Paternal
Age
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Hi everyone,
Mike here sending my two cents worth.
Robin told me about all the discussion regarding the age factor of men
causng APERT Syndrome. I was concerned about this issue as I
was 38 when
Carmen Rae was born (still 38 for 5 more days). I had a discussion
with
the Genetics Specialist at Emory University and he explained that theory
applied to men in the 50 to 60 age category.
I spent alot of time searching the INTERNET and I did find one article
regarding the "Age Factor" and research completed by Dr. Ethylin Wang
Jabs
at John Hopkins University School of Medicine. Dr. Jabs claims
that her
research shows some links between the sperm of men over age 35 and
Apert
Syndrome. I found the short article at http://www.womenconnect.com.
I
have found no further information on this matter. I think Dr.
Jabs
research may be a little off since it seems that a majority of this
group
was under thirty-five at the time of the birth of their child with
Apert
Syndrome. So far, from what I have read on the ListServer, I
am the geezer
of the group. Maybe we should take a poll of how old all our
fathers are
and maybe see how we fare against Dr. Jabs research.
After all, men do not mind telling their age. Like I said, I will
be 39 on
7-16-98. I hope to here from you regarding this matter.
God Bless.
----------
> From: Diane Youngblood <CoH1862@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Risk Factors - Paternal Age
> Date: Saturday, July 11, 1998 4:44 PM
>
> When Mallory was born in 1987, genetics had no idea what factors
were
> involved. At Vanderbilt they had 1 page in one book about Apert's.
All
they
> knew was that it was a spontaneous gene mutation. I do work in surgery
and was
> always exposed to x-rays and gasses that put people to sleep among
who
knows
> what else. As far as age, I was 35 and my husband was 33. If any
one has
any
> other info I would enjoy knowing about it.
>
> Diane Youngblood
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Date: Sat, 11 Jul 1998
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: old geezer
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Mike,
You are not the old geezer. Maybe second in line.
My husband has beat you out of that title. He was 43 when Nick
was born. I
was 34.
As for opinions on the risk factor, I firmly believe that anyone can
be a
parent to an apert child, regardless of age.
One thing that I think about though from time to time is that all the
children seem to be in functional settings for the most part.
which tells
me that we must have been hand selected to be parents to these children.
I
have yet to hear of an apert child in an abusive situation.
It just seems that these kids have all gone to homes where the parents
just
love them to pieces.
Judy
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Date: Sat, 11 Jul 1998
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Michelle's Teeth
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Hello All:
Michelle had 9 of her baby teeth removed yesterday and she is doing
great
today.
Going to the lab and then waiting in pre-op took longer than the whole
procedure(45 min). Afterwards she was out of it for a while then slept
pretty much the rest of the day.
Her pretty smile is back (minus 4 front teeth) and she has not needed
the
pain killers they prescribed, just regular tylenol. Today she ate like
a
horse and made $4 selling lemonade at our neighbors garage sale. Michelle
has pretty much always recovered like this, she is tough like her mom.
Have to go now, take care.
Ryan Bradley
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Date: Sat, 11 Jul 1998
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From: Ryan Bradley
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Subject: Paternal Age
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Hello:
Martha was 26 and I was 27 when Michelle was born. Does'nt help that
theory.
Ryan Bradley
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Date: Sat, 11 Jul 1998
22:13:15 -0400
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From: Steve & Stacy
<sshb@EROLS.COM>
Subject: Re: risk factors
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Beth.
We have read that also. My husband had just turned 29 when she was
born so that
must not always be the case.
Stacy Bell
Beth Tolson wrote:
> I have read in several articles about the lack of information about
the causes
> of Aperts. In a way, to me, it doesn't really matter anymore;
but I was
> always curious about the statement that a high paternal age is associated
with
> Aperts. My husband was 29 when Tim was born. I am wondering
about what the
> folks on this mailing list feel about this comment. Have you
read this as
> well?
>
> Beth Tolson
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Date: Sat, 11 Jul 1998
22:12:57 EDT
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: General
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Hello everyone!
Yesterday, Friday, we had our third Craniofacial Clinic. Everything
went
well, we saw a dentist for the first time. He told us that everything
looks
fine, Andrew has the typical Apert mouth with a narrow palate and quite
a bit
of extra tissue on top. He did say however, that it looks like
Andrew will
need to have his tonsils and adenoids removed in about 2 years, so
probably
when he is four. One good thing is that it does not look like
Andrew will
need a jaw widener. If he ever needs one, then it will not be
until he is
about 8 or 9 years old. The one thing that both the dentist and
Dr. Mulliken
said that is bothering me is that he may need a midface advancement.
Not that
it would be a bad thing, but we have been told up until now that it
would not
be necessary. Actually, let me rephrase that, the dentist said
that, Dr.
Mulliken said that it would be another forehead surgery when he is
10
(probably). That surgery would fix Andrew's eyes. His right
eye is lower
than the left. I guess I should be thankful that there aren't
any major
surgeries for quite some time. But it always seems that their
opinions change
everytime we see them. Either that or I was just hearing Dr.
Mulliken wrong,
he does have a problem with explaining things so you can understand.
We will
just have to see. Overall though, things went well. We
didn't get to get a
good hearing test because Andrew was getting tired and we had to reschedule
speech because there was no way he would perform.
As some of you may remember, Andrew had toe surgery to remove some ingrown
toenails earlier this year. Well, to my surprise all of them
have grown back
in the right foot. According to Dr. Upton, he cut out the nailbed
so this
wouldn't happen again. I have an app. with him in August, but
I think I will
call Monday and reschedule for an earlier time. The toenails
are getting
pretty bad. It seems they are growing at a much faster rate now.
Has anyone
had any experiences with the ingrown toenails growing back?
By the way, when we were at Clinic on Friday, I got the chance to meet
two
wonderful Apert Children that are also patients of Dr. Mulliken.
One of them
was ViVi Zhang. What a beautiful little girl and her parents
were extremely
friendly. It was so wonderful to meet them in person, they look
like a
wonderful loving family. ViVi has an older sister who sat and
colored with
Andrew for a little while. Maybe not with him, but they were
at the same
table. The amount of time I got to talk with them in the waiting
area was
wonderful. I hope they are reading this and know what a pleasure
it was to
meet them. The other girl that we met is someone who just lurks
on here, but
her picture is on Teeter's page. I apologize to her if she is
reading this,
but all I could remember was the girl's first name, Liz. I believe
the last
name began with a "B". She is 14 years old and has had all her
cranial
surgeries here in Boston and the hand surgeries have been at NYU.
She is very
friendly and quite talkative. What a beautiful young lady she
was, both
inside and out.
Now for my opinion on this Risk Factor thing. First of all, both
my husband
and I were in our 20's. And I resent the fact that we are calling
blame here.
We should not care what caused the Apert in our little kids, and should
stop
pointing fingers. We were blessed with wonderful, beautiful children
and
should just care about that. Personally, I do not care what caused
the Apert,
I do to a point, because I would love it if Andrew could have testing
done so
his children did not have it. But I have had to deal with so
much blame in my
household that it really upsets me to even be discussing this on here.
I'm
sure you all know my husband's story, but I will tell it again.
My husband
was born with Syndactylly Webbed hands and let me tell you that he
had a
tremendous amount of blame and guilt. So did the rest of his
family, because
it is inherited. I have been spending the last two years, turning
my husband
around and trying to make him feel that he is the reason Andrew has
the less
severe end of Apert, not the other way around. We did have blood
drawn from
us and the rest of his family to see if there is any connection.
Because the
two genes are very close in number. Dr. Mulliken believes that
the results
are in and that they have narrowed it down even further, but I will
check with
Dr. Upton about this, since he took all our blood, and get back to
you all.
We should be thanking God for what tremendous gifts that have been
given to us
and not so much worrying about who is to blame. Father or mother,
we all take
our part in the reproduction process. They do not know what causes
it, they
have theories but that is all it is. The gene either breaks,
splits, or
twists at 16 weeks gestation.
Well that is my little rambling for awhile. I apologize if I offended
everyone, but whenever I read these things about Risk Factor, it hurts
me all
over again, knowing what my husband has been living with and what he
continues
to live with. I guess this hits home a little more for me.
The two most
important men in my life have a disability they must live with for
the rest of
their lives. I have heard how cruel kids can be, I am just waiting
for
Andrew's turn.
Okay, okay, I am done now. Again, I am sorry for my rambling
and if it was
harsh on the rest of you. Talk to you later.
Lynn
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Date: Sat, 11 Jul 1998
23:49:07 EDT
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From: Christina Mathis
<Nodrmat26@AOL.COM>
Subject: Re: Paternal Age
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Zoey's Mom here, and must add my two cents (again), Zoey's father was
26 when
Zoey was conceived.
And I agree with the special child for special parents theory.
I have a big
heart and Zoey's fits in rather nicely. :o)
Night!
Christina
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Date: Sat, 11 Jul 1998
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Zoey's Mom here again. In response to Lynn's response to the risk
factors. I
don't think anyone was trying to place blame on anyone...wouldn't we
all like
to know where this came from and if there was anything we did so as
not to do
it again (and not because there is something wrong with our children,
because
I wouldn't trade Zoey for the healthiest baby in the world, but because
of
what these children will endure in their life...kids are VERY cruel
and it
does tear at my heart to know what they will put her through).
And from
reading this one book I have (don't have it next to me right now),
and talking
with Zoey's genetisist, it does describe something called gonadal mosaicism
(SP?) in which many of a man's sperm are affected and they could have
more
Apert children. I believe it is important to know where syndromes
come from.
In an earlier message, I did say that I believe I was chosen to take
care of
Zoey and that still stands.
My two cents.
Christina
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Date: Sun, 12 Jul 1998
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From: Jennifer Graham
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Judy,
I totally relate to what you are saying about our kids being in very
loving
and functional homes. when my husband gets a case of the "I wonder
why this
happened to us, when such horrible people get children without problems
and
complications"....(usually a few days prior to surgery), I always tell
him
that God couldn't give Jordan to someone who wouldn't be able to support
and
love him through all this. I mean, could you really see someone who
has a
history of child abuse being able and willing to go through all this?????
It
really helps to put it in perspective for him.
BTW...Joe was 26, maybe just turned 27, when Jordan was conceived. And
we are
not buying the increased paternal age thing..we have a lot of literature
that
states that. The chromium picolinate thng is interesting, and when
I was
pregnant and before I worked in nuclear medicine doing diagnostic testing
and
such so I was around all sorts of fun stuff..but several of my co-workers
were
too and their children were not born w/ any problems. I also wore a
belly
badge which monitored my levels of radioactivity, so to speak, it was
always
fine. Perhaps it is just a fluke of nature..i always tell Joe..some
things
just can not be answered...this is totally unaccecptable to him!!!!
Oh Well......
Jenn(Tampa/St. Pete)
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Date: Sun, 12 Jul 1998
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From: Jennifer Graham
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We have talked w/ our geneticist about mosaicism..(where every child
is born
w/ Apert when the parents are unaffected...basically when one of the
parents
were conceived something in their individual genetic make up didn't
quite come
out 100% so they always produce a chile w/ Apert..or whatever else
the case
may be)..she knows of only 1 family in our region of the country where
this is
the case. She did say we could be tested for it, and Joe has decided
we will
before conceiving again. what will happen if we test positive I have
no
idea..probablly consider adoption at that point....which in and of
itself in a
wonderful thing and wouldn't bother either of us at all.
Our geneticist has mentioned that we can find out where the mutation
in
Jordans 10th chromosone came form..sperm or egg..but we have opted
not to do
that...I think the guilt would be too much.... i wonder if even the
most
mentally fit person could sit by and watch everything their child has
to
endure knowing or feeling it was their fault. I know if it was my husband
he
would be too consumed in guilt..and after all...what good would it
serve???
No blame here, either..just curiousity..and wondering if I need to throw
out
my chromium...it really wasn't working anyway!!!!!! And we wouldn't
trade
Jordan for the world...he has been the best thing that has happened
to us and
in the mere 10 months hes been with us, he has taught us more than
either of
us learned in 27 years!!!
My 2000 cents worth..
Jenn(Tampa/St. Pete)
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Date: Sun, 12 Jul 1998
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From: Jenny Brown <Firefli007@AOL.COM>
Subject: Re: risk factors
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hello this is Jenny from Georgia...
here's my dollars worth
My mom was 28 when i was born, Dad was 37....and NOTHING was in the
books back
in 1966.... yes that does make me 30 something!!! BTW after
me came Margaret
and Ruth, Both "Normal"- whatever that is!!!
I think that the important thing to remember is that whatever "caused"
apert's
would be cool to know. But more importantly I look at Apert's
as a gift and
fly from there. It has taken me 25 years to finally figure that
out (Mom knew
it all along) Because all the struggle, all the surgeries, all
the
disappointments make you who are parents and we who are "apert's" people
stonger and wiser. God would not have given this to anyone
less worthy to
handle it. I am awe inspired by this incredible group on this
listserv.
Cause you guys know and really understand me!!!!
As far as teeth go - my adult teeth came in and made my mouth
overcrowded...
so along came braces... and at 26 I had my 5 wisdom teeth pulled!!!!
and for the shoulders thing. i don't have deltoid muscles so
i cant lift my
arm over my head very far. Actually i am not supposed to do that
at all, but
i'm an apert kid so i did it anyway!! :-)
I still am in payer for everyone and think of you guys daily!
so if youre
ever in Savannah look me up...
Also i have gotten lots of pictures. It is incredible the similaities.
I
have to get copies made. and i will also send pics of when i
was little....
sorry for rambling God bless!
Jenny from Ga
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Date: Sun, 12 Jul 1998
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From: Patricia Smith
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Subject: risk factors
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When Jasmyn was born, I was 26 and Steve was 32. We too have been
informed of
the age factor. Another wonderful aspect of this listserve is
that it does
bring us all together, where we can compare notes, and hopefully be
able to
consider research results with more information. I can only speak
for me and
mine, but getting over that "WHY?" step took a very, very long time.
Looking
back, I believe that part of the difficulty was the lack of research.
With not
many answers, we had lots of room for speculation. The more room for
speculation, the longer one tends to wade in the bog of fear and anger.
If
research can stop an unnecessary birth defect, or even aid to the adjustment
period, then it should be done. I don't believe that research
should be a
tool for placing blame on ourselves.
However, just for the record, I want to say this. I do blame Jasmyn's
father.
I know that it is Steve's fault that Jasmyn is the way she is. She
has his
stubborn nature, his unstoppable need for adventure, that funny little
calic
in her hair that I never can work with , the way she walks away when
SHE is
done talking about it, and a thousand other things. She is almost
a clone.
And everyday, I am so thankful that we two came together and created
exactly
the life that we have. Because first, she is Jasmyn and somewhere
down the
line, she happens to have Aperts. You know, I bet he thinks
its all my
fault, because come to think of it he has a list of his own.
I hope so.
Probably the California smog affecting my braincell production :)
Patti
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Date: Sun, 12 Jul 1998
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From: Marianne Camous
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Subject: advanced paternal age
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When we were given the provisional diagnosis by our geneticist before
Evan was
born, she mentioned this advanced paternal age thing. I was 41, Dave
42. He
has had completely gray hair since he was about 20. She looked at him
and
quickly stated that he wasn't old enough to fit into that category.
Oh well,
you had to be there..it was pretty amusing at the time.
My brother in law who is an environmental something by profession (sorry,
can't remember his exact title) thought he had seen somewhere a correlation
with heavy metal exposure but hasn't ever come up with a solid reference.
Anyone else hear anything of that?
Marianne
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Date: Mon, 13 Jul 1998
10:47:55 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Risk Factors and No-Blame
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Kia Ora Listserver Family
This is responding to Lynn's concern re "blame" (and expanding it somewhat!) so some may not be interested in reading any further, HOWEVER if you do aim for the trash button, please be aware of WHY you're not interested. The fact that you aren't interested could well mean you have something very real and important to share, something that could help someone who needs to hear you say what you think, to clarify their thinking. There is a wide range of experience on this Listserver - some "new" parents, some not-so-new, and some who have a lifetime of experience in living as a person with Apert Syndrome.
And this is a wonderful forum to share that experience.
Somewhere we have all had to face the grief issues associated with either living with or producing a child who is "different" (though with the huge and rich diversity of life on this planet I am more and more having difficulty with the concept of difference being a "problem"!). Anyone who has read any books or done any training on the issue of grief will know some of the patterns identified in the process - guilt, blame, denial, through to acceptance and assimilation. Different people have different theories but the basic emotional issues remain the same.
What needs to be remembered is that we don't all go through all the steps at the same time, or in the same order, or remain in any one place for the same period of time. Denial may be just saying "Oh, no, not our baby!" or it may go on for years. Guilt and/or blame (which I see as two sides of the same coin) may be debilitating the family, it may be the catalyst for a huge research project that benefits humankind, it may allow room for a discussion that reinforces the love and commitment between two people, or it may allow a person to come to terms with the amazing and strong person they really are. Whatever the stage, the impact and importance varies with each person, and somewhere along the line you will go through it even if you don't notice it. The important thing is to grieve, recognise your issues, and let it go.
Lynn, I acknowledge what you are saying and the issues it raises for you, particularly when you are trying to undo or balance damage that goes back to the childhood of your husband - a tough job and you deserve some extra hugs. Andrew and his father have something very special in common they can share and gain strength from.
Speaking for myself (and I can quite safely say Howard as well) there is certainly no blame being put on anyone. I passed my statistics paper but I am no statistician. My common sense tells me that the 1:160,000 chance of having a child with Apert Syndrome puts it in the rare category and at my age I could have produced a child with any sort of difference. Any statistics that put the age of either parent as being a factor in having a child with such a rare syndrome has GOT to be compared with a "normal" population. The population census for your state/country will probably provide information on the ages at which people have babies, and you could well find that the ages put forward as being a factor in Apert Syndrome are well within the "production-age" of the general population - it may even be younger!
Though I set little store on this particular research on age I still believe in the importance of research. We have two separate communities/families in New Zealand who for generations have thought they had curses on them because a large number of their people died at a young age (two different conditions). Through co-operation with the researchers the genes responsible for the conditions that caused these deaths have recently been identified and now steps can be taken to develop a means of preventing this happening in the future. Powerful stuff!!
Some people see the Genome Project as the devil in disguise, others see it as the ultimate in the quest for information. Our grandparents grew their own vegetables, we eat food that has been genetically manipulated and who knows what price our grand children or great grandchildren are going to pay, if any. The sperm from a prize racing horse can be transported more safely and more cheaply than flying the horse to another country to service the mares. Researchers are planning to manipulate the DNA of long-dead mammoths and try to raise a new breed by using cows. Animal organs are being trialled for use in humans, doing away with the protective cross-species barrier we have previously enjoyed.
Sometimes we need to ask whether there are going to be any benefits from the particular research!! What price are our children's children going to pay?
However, I support the concept of research that will help identify the cause of Apert Syndrome. As much as I adore my daughter and admire the wonderful traits that make her the individual she is (and I have no doubt the life she has lead to date has impacted on that), I really would prefer that she didn't have to go through those operations. If they can find some way of preventing that, without the need for termination, I think it is worth researching to save children of the future having to go through these horrendous operations.
That's enough from me. Any feedback?
We had our Gathering this weekend - unfortunately one family couldn't make it because a 100 yard section of the road from her area was washed out in the very heavy rain we have been experiencing over the past week. But the four families there spent the weekend doing lots of talking and the children had an absolute ball - wonderful to see. I just wish the surgeons had been able to join us to see how well our special children are doing and how well adjusted they are.
Bye for now.
Ann
Auckland
New Zealand
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Date: Mon, 13 Jul 1998
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: risk factors
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Beautifully said Patti!
Howard complains Amy is so much like me and so little like him (whew, he should see it from my viewpoint!), but I keep reminding him she has his left eyebrow - half way along it heads north instead of east-west!
Cheers
Ann
NZ
>However, just for the record, I want to say this. I do blame Jasmyn's
father.
>I know that it is Steve's fault that Jasmyn is the way she is. She
has his
>stubborn nature, his unstoppable need for adventure, that funny little
calic
>in her hair that I never can work with , the way she walks away when
SHE is
>done talking about it, and a thousand other things. She is almost
a clone.
>And everyday, I am so thankful that we two came together and created
exactly
>the life that we have. Because first, she is Jasmyn and somewhere
down the
>line, she happens to have Aperts. You know, I bet he thinks
its all my
>fault, because come to think of it he has a list of his own.
I hope so.
>
>Probably the California smog affecting my braincell production :)
>
>Patti
>
>
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Date: Sun, 12 Jul 1998
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From: Beth Tolson <ETolson643@AOL.COM>
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To all
I hope my question about paternal age wasn't interpreted as placing
blame.
Believe me, I am long past wondering why or who was to blame.
We totally
accept Tim for the wonderful individual that he is. My interest
at this point
is purely an intellectual interest...certainly preventing any child
from going
through what our children have gone through would be something I would
welcome. I don't look back now with regret...Tim has added so
much to our
lives. I only regret that he has been through so much; and still
has more
surgeries to go. It is from that viewpoint that I pose the question;
always
hoping that the research in birth defects will help a future child.
Thanks
for the responses!!!!
Beth Tolson
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Date: Sun, 12 Jul 1998
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From: Lynn Thornquist
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Subject: Blame Response
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Hello again,
This is the horrible person who brought up the blame issue. Thank
you Ann for
your wonderful note back to me in your e-mail to the rest. I
would like to
clarify a few things with what I wrote.
Maybe "blame" was the wrong thing to say, but I was just saying that
if we
find out that it is the father's fault or the mother's fault, I think
that may
cause alot of tension in some family households. Maybe not the
one's here on
the listserv, but maybe somewhere. To expand on what I said in
my previous e-
mail, they say age has alot to do with other disabilities, such as
Down
Syndrome. So I believe that knowing whether it is age responsible
does not
add much hope for stopping it. I think alot of you only remember
the bad
things I said and not the good ones. If you think back, I also
mentioned that
I am all for trying to find out how to stop this disability, so Andrew's
children may not have it. Blood has been taken from myself, my
husband, and
his family to find out if what he has is closely related. If
they are, then
that adds a whole lot of issues in this family, because blame/guilt
will start
again. Supposedly the results are in, I just need to find out.
Patti, you said it wonderfully when you said that you do blame your
husband
for Jazz's personality. What a wonderful concept because Andrew
is just like
his father in that aspect as well.
Again, I am sorry for starting some bad feelings, but I had to voice
my
opinion and that is what it is all about here, isn't it. But
I do believe
that most of you misunderstood me.
Lynn
p.s. Beth, the question about age is not what prompted me to talk about
blame.
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Date: Sun, 12 Jul 1998
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From: Janine Krebs
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When Emily was born I had a really tough time with the why question.
My
husband Brian said the same thing from day one. God gave her
to us because he
"or she" knew that we would take care of Emily and love her no matter
what,
unconditionally. He said that if God gave her to a different
family, she
would not have the best life possible for her and be surrounded by
love, and
also to get the medical care that would be necessary for her.
After the shock and the grief, as Ann has described so well, wore off
a little
bit, I was able to see that is true. I also wouldn't trade Emily
for a
"normal" child. I also say that I don't know what normal is anymore.
The
only thing I would change would be that she didn't have to go through
all of
the surgeries and suffer so much.
She has touched our lives in so many ways, ways that I never thought
possible.
Anyway, that's my thoughts.
Janine
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Date: Sun, 12 Jul 1998
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From: Robyn Johnston
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Subject: Re: General/risk factors
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>No blame here, either..just curiousity..and wondering if I need to
throw out
>my chromium...it really wasn't working anyway!!!!!!
Hi Jenn, just thought I'd share that it was Chromium picolinate that
Erin
was taking before Brenna was born. Aslo I looked at teh multi
vitamin I
took for a while and it contained it too? Not sure if it means
anything
though. I think a lot of people take it on a regualr basis with
no
problems...??? Interesting though.
Robyn
>
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From: Marianne Camous
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Subject: Re: Risk Factors and No-Blame
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Kia Ora Ann,
Once again- very well put. As a health care professional, I have
to support
the need for research and find the human genome project fascinating.
I'm old
enough to remember hearing about the Asilomar conference where all
the
concerned scientists got together to ponder the ethical dilemmas involved
in
the just barely emerging field of molecular biology. Unbeknownst to
me at the
time of the meeting, I lived about 5 miles from the conference center
and
probably watched a sunset on that beach within a day or two of these
brilliant
folks. Had I come along 5 years later, I might have become a geneticist...now
that all the work with fruit flies is unnecessary as a prerequisite.
Was it
merely coincidental that I was a volunteer in the cytogenetics lab
and
actually did karyotyping in the pre-computerized days??
Sometimes I tale a fleeting second to wonder if being in the most unbelievably
stressful work situation of my life when Evan was conceived and gestating
had
any effect. Of 4 of us who worked together, one developed hypertension,
one
severe sleep apnea, and one dies at age 35 of pancreatic cancer.But
I won't go
there. On the other hand I firmly believe that each of us is a product
of all
we experience. As much as I would love to spare my wonderful son (and
all of
us) the grief and the pain he has had to endure, would I be doing
a diservice
to us all in the long run, depriving us of important learning and growing
experiences. Hmm thoughts too deep for such a late hour.
Either way, we will get up early to get him off to thye Infant program
where
he continually delights and charms the teachers, therapists and other
kids.
What more can one ask??
Later-
Marianne
=========================================================================
Date: Mon, 13 Jul 1998
07:27:37 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: Ted Finch &
Jeanne McDermott <TFinch10@AOL.COM>
Subject: Re: APERT Digest - 11 Jul 1998
to 12 Jul 1998 (#1998-139)
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Dear Ann,
Your note was moving. I learned so much about guilt and blame from
my
grandmother whose first child was born with an incomplete leg (the
birth
described in that story that was on the listserv a ways back). The
guilt that
my grandmother carried never really went away and she lived for 97
long
years...I saw how much damage the guilt did, not only to my grandmother
but to
her relationship with my aunts and my mother. That experience, more
than
anything else, shaped how I responded when Nate was born, how I handled
the
inevitable feelings of guilt, blame and grief that accompany the birth
of any
unexpected child. To me, my son is what all children are--a bolt from
the
blue, an inexplicable surprise, a one of a kind--just MORE SO!
Jeanne in warm, sunny Boston
=========================================================================
Date: Mon, 13 Jul 1998
07:31:55 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: Ted Finch &
Jeanne McDermott <TFinch10@AOL.COM>
Subject: Re: APERT Digest - 11 Jul 1998
to 12 Jul 1998 (#1998-139)
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Random question--
Does anyone out there (Penny you pop to mind?) know anything about
acanthosis
nigricans, a skin condition which results in a darkening and thickening
of the
skin. I have a friend whose child has Crouzon's and this condition.
She's at
wit's end trying to get information but more importantly treatment.
Any leads,
ideas or suggestions greatly appreciated! E-mail me privately or Leslee
directly at lkagan@bidmc.harvard.edu. Many thanks.
Jeanne in Boston
P.S. We had an AboutFace gathering yesterday at our home. A lovely
time. One
family brought some great photos of Cher's retreat in Houston and I
was sure
that I was looking at some of the Listserv people.
=========================================================================
Date: Mon, 13 Jul 1998
08:06:10 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Mutations and other things:
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Dear Friends:
Last semester I took a Biology class. On my first day of class
I told my
teacher about Seth and about his syndrome and told him that I would
like to
get a better understanding of what had happened to cause it.
Near the end
of the semester we dealt with mutations. As it turns out mutations
happen
all the time. Some mutations affect very little, some cause major
changes,
and others are devastating. A younger woman's body often detects
when
there is a change and a spontaneous abortion occurs. An older
woman's body
is less likely to detect it and that is why more older women have Downs
babies. Now I realize that this is very general, but to realize
how easily
mutations occur has been very helpful to me.
Just look all the varieties of dogs in the world. In the beginning,
dogs
had to be able to survive in the world without human intervention.
They
had long snouts, short hair and were about 35 lbs. Most of the
dogs we see
today could not survive in the wild. These varieties came from
mutations.
People breed for these mutation: short snouts, large eyes, long hair,
short
legs, large size, small size, etc.
Rick is a Veterinarian. At one time he worried that the reason
Seth had
been born with Apert was because of the horse wormer he used daily.
Well,
if that were the case, every horse vet in the country would have a
child
with Apert. I haven't met one yet.
Changing subjects. Seth (7 years old) is going to have a
CT Wednesday in
preparation for a mid-face in late August. He is having obstructive
sleep
apnea. The ENT made three suggestions: remove some of the
uvula and soft
palate, use CPAP (assisted breathing while asleep), or have a trach
put in.
I took the problem to the cranial surgeon and it was decided
that a
mid-face advancement should be the first step (he has only been
recommending it for two years now). We have two options: the
standard
LaFort III or distraction. Dr. Marsh will help us decide which
would be
best after he studies the CT scans. I have seen the results of
the
distraction and am pleased. However, we have been told that Seth
will have
to have a trach put in regardless. In the mean time Seth
is using a nasal
inhaler called Rhinocort and after two weeks of use, it has finally
started
making a difference in his ability to breath at night. He still
has
problems during the REM stage.
We are going to St. Louis today for a short holiday before the CT on
Wednesday. We are meeting friends at the zoo today. Tomorrow
we are going
to the Botanical Gardens to see the dinosaur display. We will
eat out,
party, see friends and family for two days. Seth loves to go
out of town
and party.
I don't spend much time feeling guilty. It is a wasted emotion.
It serves
no purpose except to make me feel bad. I'd rather feel joy and
that is
just what I feel when Seth hugs me and say, "Who, loves you, Mama?"
Warmly, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Mon, 13 Jul 1998
09:21:16 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Risk Factors and No-Blame
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Well....this topic seems to be never ending...perhaps a paper should
be
written on all of us..Now THAT would be interesting dontcha think?????
Anyway.. with all this talk of geneticism and all......I too gave some
thought
ot going into the field, but with all that research...YUCKO!!!!! I
barely made
it through graduate school b/c of my phobia of libraries...far to
confining..thank goodness for adobe acrobat and online libraries!!!
Anyway...I happened to watch the movie Gatica this weekend and it really
got
us thinking....its about the creation of the perfect huma race and
its effect
due to discrimination of those created the "natural way" as opposed
to the
scientific way. Its more of a human interest movie as opposed to sci-
fi...EXCELLENT flick...2 thumbs up here...but raised some questions
as we are
very pro-genetic research and hope that by the time Jordan is old enough
to
have children...or rather old enough to be mature and responsible enough
to
have children (30 or so..hahahha) that perhaps they can isolate the
mutated
10th chromosone and toss it aside.....and then let the reproductive
cycle
continue naturally..for no other reason that so he is spared having
ot watch
his child/children go thorugh what we have had to watch him go through...now
and in the future..
Of course, spending so much time in the Childrens Hospital its apparent
many
other things could go "wrong" but thats just how fate deals the hands...You
can't fix everything, and I don't think the world would be a better
place if
you did...probablly a worse off one.
Too intense for such an early morning...I must go lighten up by playing
peek-
a-boo!!!
Now I am officially down off my soap box...anyone else can feel free
to jump
on!!! HAHA!!
Jenn(Tampa/St. Pete)
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