>My daughter, Rachel, has a wonderful pediatric dentist that asks (but
doesn't
>insist) that parents wait in the waiting room. From my experience,
Rachel
>(age 5 tomorrow) has done much better without me in the room with
her. When
>I have been with her (only at the dentist) she cries and refuses to
>cooperate.
Gail, from my experience with Amy (8+1/2) I think what happens is, if you are there they don't have to be brave because you will look after them. Once they get a little older, they have more life experience and if you aren't there they just have to go with the flow. However, in those early years I think it is important that they have their Mum or Dad with them.
And thanks to everyone for the observations about holding or holding-down the children. I think in the early days I was so stunned by it all I just did as I was told - but further down the track I intend standing up for my right to be her mother, not her nurse.
Cheers
Ann
NZ
=========================================================================
Date: Thu, 29 Jul 1999
18:38:52 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: RED System
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Nick will be in the public school homebound program at his doctors request until the device is removed.
Our Amy has decided not going to school sounds pretty exciting, and that aspect of it seems to have over-ridden her anxieties (for the moment anyway!). We don't have the external device in NZ at the moment but it certainly sounds the preferred system for me. Amy doesn't want to wear a "halo" so maybe a "crown" would be better accepted if we do have a choice when the time comes!
Will be interested to hear how you manage to keep each other occupied, happy and sane during this time! And to know what Nick can/will eat.
Ann
NZ
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Date: Thu, 29 Jul 1999
06:29:00 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Happy Birthday to Rachel!
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Hi Gail, I just wanted to say keep up the good work. You must be doing
something right,she's making you proud and thats alright. And a BIG
5th
HAPPY BIRTHDAY TO RACHEL!!! Hope you all have a great day!! Take Care.
Have
a fun DAY! Max
=========================================================================
Date: Fri, 30 Jul 1999
01:41:26 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: How do they prescribe glasses
so young?
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April,
We were told also that they can't completely tell how farsighted Samantha
is
until she can speak. But he said that he knows she is because
when she
tracks she has to move her whole head. We never noticed this.
Most kids and
adults track just by moving their eyeball. He kept putting lenses
over her
eyes until she stopped moving her head and just tracked with her eyeballs.
Once we find glasses that fit her correctly then he'll be able to do
more
tests. We are also speaking to him about contacts.
Samantha's theapist
told us that a lot of her kids with cornea problems where contacts.
That it
is pretty common with babies now. But we have to discuss further.
Hope
this helps a little bit.
Can't wait to get Saige's pictures.
Love, Lisa Guyette (mother of Samantha 81/2 months)
=========================================================================
Date: Fri, 30 Jul 1999
08:23:28 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Carmen Rae
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Just wanted to thank everyone for keeping Carmen Rae in their prayers.
She
did great during surgery and now has pointers! She should be
coming home
later today. Talk to ya later.
Robin
P.S. TO LIZ!!! Sorry I didn't let you know about Carmen's
surgery sooner.
My brain gets a LITTLE scattered the days leading up to surgery.
Talk to
ya soon, and thanks for calling the hospital to check on her.
=========================================================================
Date: Fri, 30 Jul 1999
10:00:05 EDT
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: Carmen Rae
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I am so glad she pulled through the sugery so well, now has fingers
to point
with! May she have a speedy recovery and may the next sugery be as
successful
as this one was. I understand Asher is having sugery too my prayers
and
thoughts will be with Asher's family as well as Asher. Robin I will
call you
soon so that we can make plans to get together again soon!
Liz Saylan
P.S. I hope everyone else is doing great! I hope Teeter and Nick get
well
soon!
=========================================================================
Date: Fri, 30 Jul 1999
19:10:24 -0500
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Wart on Foot
MIME-Version: 1.0
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Hello everyone,
This is Deb Picht (Mother of Lisa now 10). I have a question for
anyone =
to reply back on. I think the older ones will be the ones to
best =
answer this question.
Lisa has a planters wart on the bottom of her foot. We are having
it =
taken care of on Tuesday. They will burn it off.=20
My question is: Has anyone had problems with this? Her toes
are still =
fused and we do not plan on separating them.
She has never complained about it and I only noticed it last night.
It =
is big. At first I thought it was a callus.
She puts her own shoes and socks on and she has been taking showers
=
instead of baths so I do not see the bottom of her feet.
I happened to =
turn her foot a little bit to clip the toe nails. That is how
I found =
it. I feel so bad that I did not notice it sooner. But
she never =
complains about anything. I think that is a trait of Aperts.
She =
really is not walking any different either. =20
I will wait for any feedback I can get. =20
Thank you
Deb Picht
rldpicht@starpoint.net
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charset="iso-8859-1"
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<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3510.1400"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hello everyone,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>This is Deb Picht (Mother
of Lisa =
now 10). =20
I have a question for anyone to reply back on. I think the
older =
ones will=20
be the ones to best answer this question.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Lisa has a planters wart
on the =
bottom of her=20
foot. We are having it taken care of on Tuesday.
They =
will=20
burn it off. </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>My question is:
Has anyone had =
problems=20
with this? Her toes are still fused and we do not plan on
=
separating=20
them.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>She has never complained
about it =
and I only=20
noticed it last night. It is big. At first I thought
it was =
a=20
callus.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>She puts her own shoes and
socks on =
and she has=20
been taking showers instead of baths so I do not see the bottom of
her=20
feet. I happened to turn her foot a little bit
to clip the =
toe=20
nails. That is how I found it. I feel so bad that
I did not =
notice=20
it sooner. But she never complains about anything.
I think =
that is a=20
trait of Aperts. She really is not walking any different
=
either. =20
</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I will wait for any feedback
I can =
get. =20
</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thank you</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Deb Picht</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2><A=20
href=3D"mailto:rldpicht@starpoint.net">rldpicht@starpoint.net</A></FONT><=
/DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_000A_01BEDABF.2D535FC0--
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Date: Fri, 30 Jul 1999
21:37:15 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: some news
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My doctors appointment last week turned out as I predicted. The
ibuprofen did not do as well as we had hoped. We discussed some
options,
including cortisone, which we eliminated because of the many negative
side effects. She sent me to a physiologist, a doctor specializing
in
physical therapy. I saw him yesterday and went through a head
to toe
examination. He seemed to know some things about Apert's and
the limited
range of motion in the joints that I have. He feels the pain
and popping
I am experiencing in my joints is due to wear and tear. Gee,
I'm only
34!!!! But as my family doc said, I put more use into some joints
to
compensate for other ones I'm not using as well. I am going to
have
Physical Therapy, in fact, I will be a patient of the folks I'm working
with. There's nothing like choosing your favorite PT from previous
experience! This should be interesting. Right when I am
heading off to
college to study rehabilitation too! I'll have some personal
experience
and hands on work to fall back on.
The drugs I am taking for my depression combined with the counseling
seems to be doing it's thing. I am no longer in bed until I felt
like
getting up, or mother nature called, which ever came first. There
is a
light at the end of the tunnel, but it's a warning light to caution
me
from going to fast and rushing my recovery. I am quite aware
of some
problems I need to resolve once and for all. Some have plagued
me since
early childhood. In time all things will be okay.
Oh, the car saga is over, finally. It ended with me in my mom's
borrowed
car while mine was being repaired, for the umpteenth time, sitting
at a
stop light and her car dying on me. Her alternator quit.
between the
two cars, we sunk $1,000 in one week into repairs!!! I have heard
$1,000
is a nice down payment for a NEW car!!!
Other than the unbearable heat, all else is fine. Hope it's true
for
you!
Joanne
=========================================================================
Date: Fri, 30 Jul 1999
22:18:37 -0700
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
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Richard Tait wrote:
>
> Sorry that I don't write much, but I have a question for everyone.
I hope
> that you can all help me with this.
>
> Have any of you heard or had experience with Apert syndrome children
having
> ADHD (Attention Deficit with Hyperactivity Disorder).
>
> I think that we may have it, and we want to do some researching before
we
> are into the school system.
>
> Thanks in advance,
> Rene and family
I am aware of one aperts child in our city who has ADHD> I have
rarely
heard of an apert's child having this disorder however..?
=========================================================================
Date: Fri, 30 Jul 1999
23:11:37 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
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I have a favor to ask... My doctor is interested in reading more about
the Red procedure. Information about the details were sent out
not to
long ago. Could someone please send them again? Thanks!
Joanne
=========================================================================
Date: Sat, 31 Jul 1999
16:05:20 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Wart on Foot
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Kia ora Deb!
I am so pleased to read your request, I thought I was the only one who hadn't picked this up as early as I thought I should!!
I noticed Amy had lumps on her feet and the skin was an unpleasant red lumpy/blistery texture, and, like everything else happening to her at the time, put it down to her syndrome. But oh no, it was plain old verrucas and tinea (how embarrassing!). Creams and tinctures cleared it all up, no surgery/burning needed. Now we routinely use foot powders in her socks and as soon as I see the reddish colour and/or blistering appear on goes the antifungal cream (with lowdose steroid if blistered) and it clears up very quickly. No sign of any more verruca.
All the best for the footcare.
Ann
NZ
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Date: Sat, 31 Jul 1999
17:07:37 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: ADHD with Apert
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>> Have any of you heard or had experience with Apert syndrome children
having
>> ADHD (Attention Deficit with Hyperactivity Disorder).
This rings a bell with me and I certainly have the gut feeling that this is not unusual, having read something about this "somewhere" - but I just cannot trace WHERE!
In the meantime until I can track this down - the UK CFSG could be of some help and you could check with Steve Moody (are you there Steve?), because back in their Spring 1998 newsletter they had an article on learning difficulties, and their Spring 1999 newsletter contains information on possible links between "some craniofacial conditions and certain patterns of behaviour which vary from the 'norm'." - in this particular instance they are specifically looking at Autism, but someone from that part of the world may have information on ADHD if they have been considering these issues.
Some of you may remember we had conversations about the "jiggling" phenomenon with some of our children - does that ring any bells?
Also back in 1997 there was discussion on the Listserver, some of which I still have on file if you want me to email it to you.
We have an ADHD organisation here in NZ that provides support and information to parents, so I am sure you will have something similar over your side of the world.
All the best
Ann
NZ
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Date: Sat, 31 Jul 1999
13:29:08 -0500
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: ADHD
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Hello again,
I don't remember who sent the message regarding ADHD. We thought
Lisa =
had ADD. She did not have the hyperactiviy portion of it so they
did =
not consider her to have ADHD.
She has a very hard time staying focused in school so we put her through
=
a 3 week blind study on Ridalin.
One week was a high dose, another week it was a low dose and other
week =
is was no dose. We did not know what she was taking. (Like I
said it =
was a blind study) We examined her and the school also examined
her and =
we did not see any difference after the 3 week period. =20
It was concluded that Lisa was not focusing the way she should because
=
she is also missing the corpus collosum. (A part of her brain)
Our =
local pediatrician told us that putting her on ridalin would not solve
=
the focusing problem. This would maybe do her more harm than
good =
because Lisa has always been real happy and being on Ridalin could
=
change that. Lisa just needs to be reminded more than other
children =
to concentrate on what she is doing. But too she is mildly retarded
=
which is another strike against her.
This is my 2 cents on ADHD.
Deb Picht
rldpicht@starpoint.net
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<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hello again,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I don't remember who sent
the =
message regarding=20
ADHD. We thought Lisa had ADD. She did not have
the =
hyperactiviy=20
portion of it so they did not consider her to have ADHD.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>She has a very hard time staying focused
in school =
so we put=20
her through a 3 week blind study on Ridalin.</FONT></DIV>
<DIV><FONT size=3D2></FONT><FONT color=3D#000000 size=3D2>One
week was a =
high dose,=20
another week it was a low dose and other week is was no dose.
We =
did not=20
know what she was taking. (Like I said it was a blind study)
We =
examined=20
her and the school also examined her and we did not see any difference
=
after the=20
3 week period. </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>It was concluded that Lisa was not focusing
the way =
she should=20
because she is also missing the corpus collosum. (A part
of her=20
brain) Our local pediatrician told us that putting her on
ridalin =
would=20
not solve the focusing problem. This would maybe do her more
harm =
than=20
good because Lisa has always been real happy and being on Ridalin could
=
change=20
that. Lisa just needs to be reminded more than
other =
children to=20
concentrate on what she is doing. But too she is mildly retarded
=
which is=20
another strike against her.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>This is my 2 cents on ADHD.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Deb Picht</FONT></DIV>
<DIV><FONT size=3D2><A=20
href=3D"mailto:rldpicht@starpoint.net">rldpicht@starpoint.net</A></FONT><=
/DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV> </DIV>
<DIV><FONT size=3D2></FONT> </DIV></BODY></HTML>
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Date: Sat, 31 Jul 1999
17:11:13 EDT
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Happy Birthday to Rachel!
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Thanks for all the birthday wishes to Rachel!! She's starting
to really
"grow up" now!
Take care. Gail
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Date: Sat, 31 Jul 1999
19:18:11 EDT
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From: Jenngram@AOL.COM
Subject: development
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As it approaches Jordan's second birthday, I am also reminded of all
the
doubts about how he would "function" from both a physical standpoint
(I never
thought he'd get on his belly, yet he walked at 1 and now sleeps, plays,
and
bathes on his tummy these days!!!) and a mental one. Nothing pleases
me more
than picking him up form his
pre-pre school in the evening and having all the teachers say
he is doing
just what all the others are doing. Although his speech therapist still
tries
to get me to put him in early intervention, like he was in Florida,
being in
a regular classroom setting has done nothing but shown him all the
things he
can do and succeed at if he just tries. Both the positive tasks and
words and
the not so positive ones!!!!
For all those parents who, like me, are forced to watch Blues Clues
day in
and day out, perhaps the best lesson learned from Blue and her friends
is the
most repetitive one of, "You can do anything you want to do."
Happy birthday to all those coming and just recently passed and best
of luck
for upcoming surgeries and those recouping.
Jenn (Columbus, Ohio)
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Date: Sun, 1 Aug 1999
13:15:14 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: ADHD/ADD/Concentration
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We need to keep in mind here the difference between ADD, ADHD and just plain difficulty in concentrating/focussing on a task (also, is 3 weeks long enough for Ritilan?) and the readiness or otherwise of "professionals" to label children.
Amy has difficulty staying focussed and we have worked out a few motivational strategies to try and improve this. With all the classroom activity she cannot hold on to more than two instructions at any one time.
There is also a query on the integrity of Amy's corpus callosum. We don't know what the difference is as the scan was not clear, and we can't do anything about it anyway, so just try to develop strategies to help her.
Ann
NZ
>She has a very hard time staying focused in school so we put her through
a 3 week blind study on Ridalin.
>It was concluded that Lisa was not focusing the way she should because
she is also missing the corpus collosum.
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Date: Sat, 31 Jul 1999
21:46:48 EDT
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From: Copperhd87@AOL.COM
Subject: Re: development
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Jenn,
Congratulations on Jordan's continued progress. We too had so
many doubts
about Mitchell, but he's now doing just fine. I share in your
joy.
The lady who cuts our children's hair has became a friend and prayer
partner
a long time ago. She has a child with epilepsy, so she knows
what it's like
to have a child with special medical needs. Her step-daughter
just gave
birth to a child with Down's Syndrome. She has a very postive
attitude about
it and I really am feeling a shift in our culture toward real acceptance
of
people with special needs. Although it will be hard for her to
part with
that dream of the perfect child, this is not nearly the tragic situation
that
it once was. Isn't that wonderful?
Thanks for listening,
Resa