Thank you Jennifer and congratulations on your advancements.  I actually
remember reading Dr. Rosenbaum's name in the wikipedia entry for Duane's Syndrom
(champion of the VRT surgery it said).  Thank you for the information and again,
congratulations on your surgery!

-Tim

--- In duanes@yahoogroups.com, Jennifer Babek <jbabek@...> wrote:
>
> Welcome. Such beautiful babies you have. Im a 35 year old with Duanes in my
left eye. I've had 4 surgeries with my last and only successful surgery in July
of this year at UCLA.  The last post was very correct about many specialists
not being really aware of everything that can be done. They seem to have basic
information but I think that Duanes is so rare that they don't spend much
time looking into current advances. My first 3 surgeries were all done by
specialists that reported that they were specialists in treating Duane's. Im
sure that they did the best they could do at the time; but I was blown away
when I returned in 2007 to my last surgeon and he told me their was nothing
else that could be done. I found out through this group that there was more that
could be done and that's when I went to see Dr. Rosenbaum. My eye is now as
close to average as possible with Duane's and as a result I feel much better
about things. Please let me know if
>  you ever need anything.  Jennifer
>
>
> ________________________________
> From: emjcol2 <emjcol2@...>
> To: duanes@yahoogroups.com
> Sent: Tue, November 17, 2009 4:03:06 PM
> Subject: [duane's] Re: Hello
>
>  
>
>
> Hi. Welcome to the group. It is a wonderful source of information. Take a look
at the links, files and archives for past posts, and feel free to ask any
specific questions.
>
> Rest assured, raising a child with DS should be no different than raising any
other child and having DS should not prevent her from leading a "normal" and
fulfilling life. Just a couple of things to bear in mind.
>
> Duanes is relatively rare and not all "specialists" are familiar with it. Make
sure you get good advice before doing anything (or not doing anything!). Surgery
is an option in some cases. It can improve the alignment of the eyes but it will
not restore full lateral movement. Duanes is a nerve problem not a muscular one.
Some surgeries (VRT) can result in increased movement, but this is not
guarenteed. If you are thinking about surgery, check out the archives for "vrt"
and "mrr" which are the most common types of surgery.
>
> Do not make a "big thing" about the DS. As she gets older she will learn that
she can do a special eye trick that her friends can't do. i.e. she will be able
to cross her eyes voluntarily. Let her think that this is a special ability
rather than a disability. Don't automatically assume that she will get teased.
Make sure she feels good about herself generally and let her know about her
condition. If she can explain to any potential teaser that she has a rare eye
condition and doesn't appear bothered by it, she is less likley to get teased.
>
> Don't assume that duanes will prevent her from doing anything. As a general
rule it shouldn't.
>
> Carol (mum to Emily - 10 years - DS type 1)
>
> ---- In duanes@yahoogroups. com, "thoefer" <tim@> wrote:
> >
> > Hello everyone,
> >
> > My wife, Ann, and I have 3 daughters. 3 yr. old Kate, 7 mo. old Mya and 7
mo. old Aubrey. Mya and Aubrey were born at 34w5d back in April. Healthy and
breathing room air, though admitted to the NICU due to being premature. Mya's
left eye has always turned in. Her pediatrician indicated that it's something to
keep an eye on but early on it's hard to tell -- it could very well be just
Strabismus. At her 6 mo. checkup, though, her pediatrician said that at her age,
it's very well likely Duane's Syndrome and scheduled us to see an eye
specialist.
> >
> > A few hours ago, we had that appointment and received the diagnosis from the
specialist. Though he did indicate that she has very healthy eyes, with a little
bit of far-sightedness which is expected at her age -- after moving a toy in
front of her as well as watching her eyes react after spinning us two times in
either direction on a swivel chair, he diagnosed her as having Duane's Syndrome.
> >
> > He indicated that she did not compensate a lot with her head movement and
said that noticeable compensation is a primary reason to consider surgery.
Despite that, he still recommended we speak with University of Iowa specialists
to learn about surgery and learn more about DS.
> >
> > As odd as it sounds, Ann's sister, Karla, (30-something) has always had a
"lazy eye". It was never diagnosed and now, at her age, she has only recently
decided to see someone about it. Within this past month she's told us that a U
of I specialist diagnosed her as having Duane's Syndrome and she has elected for
surgery to have her eye straightened.
> >
> > Karla has kept to herself about it quite a bit but today, after our
appointment, Ann called her to tell her that Mya had been diagnosed with DS.
Karla reflected on her childhood and teasing as one of the things she had to
endure. Ann and I will talk more tonight about her conversation with Karla but I
wanted to reach out to join others that are in the same boat as we are.
> >
> > We want to learn as much as possible about raising a child with DS so we
both joined this group and look forward to interacting with all of you.
> >
> > This is still all new to us (only hours new really). Though we lived through
Mya having ovarian hernia surgery a few months ago, we never thought we'd be in
a position to need to learn what best way to help her deal with something
"abnormal" for the rest of her life.
> >
> > Thanks in advance for everything.
> >
> > - Tim "thoefer" & Ann "misskavon"
> >
>

Thank you for your kind advice and guidance Carol.

--- In duanes@yahoogroups.com, "emjcol2" <emjcol2@...> wrote:
>
>
>
>
> Hi.  Welcome to the group.  It is a wonderful source of information.  Take a
look at the links, files and archives for past posts, and feel free to ask any
specific questions.
>
> Rest assured, raising a child with DS should be no different than raising any
other child and having DS should not prevent her from leading a "normal" and
fulfilling life.  Just a couple of things to bear in mind.
>
> Duanes is relatively rare and not all "specialists" are familiar with it. Make
sure you get good advice before doing anything (or not doing anything!). Surgery
is an option in some cases.  It can improve the alignment of the eyes but it
will not restore full lateral movement. Duanes is a nerve problem not a muscular
one.  Some surgeries (VRT) can result in increased movement, but this is not
guarenteed.  If you are thinking about surgery, check out the archives for "vrt"
and "mrr" which are the most common types of surgery.
>
> Do not make a "big thing" about the DS. As she gets older she will learn that
she can do a special eye trick that her friends can't do.  i.e. she will be able
to cross her eyes voluntarily.  Let her think that this is a special ability
rather than a disability.  Don't automatically assume that she will get teased. 
Make sure she feels good about herself generally and let her know about her
condition.  If she can explain to any potential teaser that she has a rare eye
condition and doesn't appear bothered by it, she is less likley to get teased.
>
> Don't assume that duanes will prevent her from doing anything.  As a general
rule it shouldn't.
>
> Carol (mum to Emily - 10 years - DS type 1)
>
>  ---- In duanes@yahoogroups.com, "thoefer" <tim@> wrote:
> >
> > Hello everyone,
> >
> > My wife, Ann, and I have 3 daughters.  3 yr. old Kate, 7 mo. old Mya and 7
mo. old Aubrey.  Mya and Aubrey were born at 34w5d back in April.  Healthy and
breathing room air, though admitted to the NICU due to being premature.  Mya's
left eye has always turned in.  Her pediatrician indicated that it's something
to keep an eye on but early on it's hard to tell -- it could very well be just
Strabismus.  At her 6 mo. checkup, though, her pediatrician said that at her
age, it's very well likely Duane's Syndrome and scheduled us to see an eye
specialist.
> >
> > A few hours ago, we had that appointment and received the diagnosis from the
specialist.  Though he did indicate that she has very healthy eyes, with a
little bit of far-sightedness which is expected at her age -- after moving a toy
in front of her as well as watching her eyes react after spinning us two times
in either direction on a swivel chair, he diagnosed her as having Duane's
Syndrome.
> >
> > He indicated that she did not compensate a lot with her head movement and
said that noticeable compensation is a primary reason to consider surgery. 
Despite that, he still recommended we speak with University of Iowa specialists
to learn about surgery and learn more about DS.
> >
> > As odd as it sounds, Ann's sister, Karla, (30-something) has always had a
"lazy eye".  It was never diagnosed and now, at her age, she has only recently
decided to see someone about it.  Within this past month she's told us that a U
of I specialist diagnosed her as having Duane's Syndrome and she has elected for
surgery to have her eye straightened.
> >
> > Karla has kept to herself about it quite a bit but today, after our
appointment, Ann called her to tell her that Mya had been diagnosed with DS.
Karla reflected on her childhood and teasing as one of the things she had to
endure.  Ann and I will talk more tonight about her conversation with Karla but
I wanted to reach out to join others that are in the same boat as we are.
> >
> > We want to learn as much as possible about raising a child with DS so we
both joined this group and look forward to interacting with all of you.
> >
> > This is still all new to us (only hours new really).  Though we lived
through Mya having ovarian hernia surgery a few months ago, we never thought
we'd be in a position to need to learn what best way to help her deal with
something "abnormal" for the rest of her life.
> >
> > Thanks in advance for everything.
> >
> > - Tim "thoefer" & Ann "misskavon"
> >
>

Hi.  Welcome to the group.  It is a wonderful source of information.  Take a
look at the links, files and archives for past posts, and feel free to ask any
specific questions.

Rest assured, raising a child with DS should be no different than raising any
other child and having DS should not prevent her from leading a "normal" and
fulfilling life.  Just a couple of things to bear in mind.

Duanes is relatively rare and not all "specialists" are familiar with it. Make
sure you get good advice before doing anything (or not doing anything!). Surgery
is an option in some cases.  It can improve the alignment of the eyes but it
will not restore full lateral movement. Duanes is a nerve problem not a muscular
one.  Some surgeries (VRT) can result in increased movement, but this is not
guarenteed.  If you are thinking about surgery, check out the archives for "vrt"
and "mrr" which are the most common types of surgery.

Do not make a "big thing" about the DS. As she gets older she will learn that
she can do a special eye trick that her friends can't do.  i.e. she will be able
to cross her eyes voluntarily.  Let her think that this is a special ability
rather than a disability.  Don't automatically assume that she will get teased. 
Make sure she feels good about herself generally and let her know about her
condition.  If she can explain to any potential teaser that she has a rare eye
condition and doesn't appear bothered by it, she is less likley to get teased.

Don't assume that duanes will prevent her from doing anything.  As a general
rule it shouldn't.

Carol (mum to Emily - 10 years - DS type 1)

  ---- In duanes@yahoogroups.com, "thoefer" <tim@...> wrote:
>
> Hello everyone,
>
> My wife, Ann, and I have 3 daughters.  3 yr. old Kate, 7 mo. old Mya and 7 mo.
old Aubrey.  Mya and Aubrey were born at 34w5d back in April.  Healthy and
breathing room air, though admitted to the NICU due to being premature.  Mya's
left eye has always turned in.  Her pediatrician indicated that it's something
to keep an eye on but early on it's hard to tell -- it could very well be just
Strabismus.  At her 6 mo. checkup, though, her pediatrician said that at her
age, it's very well likely Duane's Syndrome and scheduled us to see an eye
specialist.
>
> A few hours ago, we had that appointment and received the diagnosis from the
specialist.  Though he did indicate that she has very healthy eyes, with a
little bit of far-sightedness which is expected at her age -- after moving a toy
in front of her as well as watching her eyes react after spinning us two times
in either direction on a swivel chair, he diagnosed her as having Duane's
Syndrome.
>
> He indicated that she did not compensate a lot with her head movement and said
that noticeable compensation is a primary reason to consider surgery.  Despite
that, he still recommended we speak with University of Iowa specialists to learn
about surgery and learn more about DS.
>
> As odd as it sounds, Ann's sister, Karla, (30-something) has always had a
"lazy eye".  It was never diagnosed and now, at her age, she has only recently
decided to see someone about it.  Within this past month she's told us that a U
of I specialist diagnosed her as having Duane's Syndrome and she has elected for
surgery to have her eye straightened.
>
> Karla has kept to herself about it quite a bit but today, after our
appointment, Ann called her to tell her that Mya had been diagnosed with DS.
Karla reflected on her childhood and teasing as one of the things she had to
endure.  Ann and I will talk more tonight about her conversation with Karla but
I wanted to reach out to join others that are in the same boat as we are.
>
> We want to learn as much as possible about raising a child with DS so we both
joined this group and look forward to interacting with all of you.
>
> This is still all new to us (only hours new really).  Though we lived through
Mya having ovarian hernia surgery a few months ago, we never thought we'd be in
a position to need to learn what best way to help her deal with something
"abnormal" for the rest of her life.
>
> Thanks in advance for everything.
>
> - Tim "thoefer" & Ann "misskavon"
>

Found the online gallery and added a few pictures of Mya...

http://groups.yahoo.com/group/duanes/photos/album/566971894/pic/list

--- In duanes@yahoogroups.com, "thoefer" <tim@...> wrote:
>
> Hello everyone,
>
> My wife, Ann, and I have 3 daughters.  3 yr. old Kate, 7 mo. old Mya and 7 mo.
old Aubrey.  Mya and Aubrey were born at 34w5d back in April.  Healthy and
breathing room air, though admitted to the NICU due to being premature.  Mya's
left eye has always turned in.  Her pediatrician indicated that it's something
to keep an eye on but early on it's hard to tell -- it could very well be just
Strabismus.  At her 6 mo. checkup, though, her pediatrician said that at her
age, it's very well likely Duane's Syndrome and scheduled us to see an eye
specialist.
>
> A few hours ago, we had that appointment and received the diagnosis from the
specialist.  Though he did indicate that she has very healthy eyes, with a
little bit of far-sightedness which is expected at her age -- after moving a toy
in front of her as well as watching her eyes react after spinning us two times
in either direction on a swivel chair, he diagnosed her as having Duane's
Syndrome.
>
> He indicated that she did not compensate a lot with her head movement and said
that noticeable compensation is a primary reason to consider surgery.  Despite
that, he still recommended we speak with University of Iowa specialists to learn
about surgery and learn more about DS.
>
> As odd as it sounds, Ann's sister, Karla, (30-something) has always had a
"lazy eye".  It was never diagnosed and now, at her age, she has only recently
decided to see someone about it.  Within this past month she's told us that a U
of I specialist diagnosed her as having Duane's Syndrome and she has elected for
surgery to have her eye straightened.
>
> Karla has kept to herself about it quite a bit but today, after our
appointment, Ann called her to tell her that Mya had been diagnosed with DS.
Karla reflected on her childhood and teasing as one of the things she had to
endure.  Ann and I will talk more tonight about her conversation with Karla but
I wanted to reach out to join others that are in the same boat as we are.
>
> We want to learn as much as possible about raising a child with DS so we both
joined this group and look forward to interacting with all of you.
>
> This is still all new to us (only hours new really).  Though we lived through
Mya having ovarian hernia surgery a few months ago, we never thought we'd be in
a position to need to learn what best way to help her deal with something
"abnormal" for the rest of her life.
>
> Thanks in advance for everything.
>
> - Tim "thoefer" & Ann "misskavon"
>

Hello everyone,

My wife, Ann, and I have 3 daughters.  3 yr. old Kate, 7 mo. old Mya and 7 mo.
old Aubrey.  Mya and Aubrey were born at 34w5d back in April.  Healthy and
breathing room air, though admitted to the NICU due to being premature.  Mya's
left eye has always turned in.  Her pediatrician indicated that it's something
to keep an eye on but early on it's hard to tell -- it could very well be just
Strabismus.  At her 6 mo. checkup, though, her pediatrician said that at her
age, it's very well likely Duane's Syndrome and scheduled us to see an eye
specialist.

A few hours ago, we had that appointment and received the diagnosis from the
specialist.  Though he did indicate that she has very healthy eyes, with a
little bit of far-sightedness which is expected at her age -- after moving a toy
in front of her as well as watching her eyes react after spinning us two times
in either direction on a swivel chair, he diagnosed her as having Duane's
Syndrome.

He indicated that she did not compensate a lot with her head movement and said
that noticeable compensation is a primary reason to consider surgery.  Despite
that, he still recommended we speak with University of Iowa specialists to learn
about surgery and learn more about DS.

As odd as it sounds, Ann's sister, Karla, (30-something) has always had a "lazy
eye".  It was never diagnosed and now, at her age, she has only recently decided
to see someone about it.  Within this past month she's told us that a U of I
specialist diagnosed her as having Duane's Syndrome and she has elected for
surgery to have her eye straightened.

Karla has kept to herself about it quite a bit but today, after our appointment,
Ann called her to tell her that Mya had been diagnosed with DS. Karla reflected
on her childhood and teasing as one of the things she had to endure.  Ann and I
will talk more tonight about her conversation with Karla but I wanted to reach
out to join others that are in the same boat as we are.

We want to learn as much as possible about raising a child with DS so we both
joined this group and look forward to interacting with all of you.

This is still all new to us (only hours new really).  Though we lived through
Mya having ovarian hernia surgery a few months ago, we never thought we'd be in
a position to need to learn what best way to help her deal with something
"abnormal" for the rest of her life.

Thanks in advance for everything.

- Tim "thoefer" & Ann "misskavon"

My son has DS Type 1 in his right eye and sometimes when he is tired it seems to
turn in toward his nose when looking straight ahead. Otherwise, it is pretty
much always symmetrical ahead. His eye does not turn out to the right at all.

Appreciate the info on teasing with DS. I was teased a lot as a child for
various things - wearing glasses, being overweight, and my last name...so I
worry that my son will be teased, but know that is part of growing up! I am
probably a better person for having to deal with teasing, but it is so hard as a
child and I did go through some pretty rough times with it. I agree that giving
lots of love and support and not brushing teasing off is very important! Even
the slightest remark can harm our self-esteem. I am still sensitive to things
now, but am able to handle it better.
Julie

Hi - My daughter Amelia has type 1 in her left eye and did not crawl until 15
months and walk until around 20 months.  She was consistently late in all her
gross motor milestones and was in PT until a little over 4.  She's now 5 1/2 
and you would never she ever behind - still not the most coordinated sometimes
but she gets that from me.  Don't get discouraged!

Christie

--- In duanes@yahoogroups.com, "wileyae" <wileyae@...> wrote:
>
> Hi Clara,
> I am the mother of a 15 month old son with Type 1 in his left eye and he is
not walking on a consistent basis yet.  I'm not certain how late your child is
in walking, but my child isn't exactly "late" yet, but he's definitely not
setting any records either....good luck!
> Anne
>
>
> --- In duanes@yahoogroups.com, "Pat Smith" <patsmith21@> wrote:
> >
> > Hello Clara
> >
> > I don't know if I walked late as again I cannot ask my Mother about that as
she is dead. However, I have not had balance problems or of feeling dizzy and do
not recall walking into walls. Maybe my brain adjusted early so that I became
able to give obstacles a wide berth when approaching them. I can see how the
problem would arise though if I was looking out of the eye on the side away from
the obstacle, i.e. if the obstacle was to my left and I had my left eye shut
while looking out of my right eye. I would try to keep both eyes open and
looking when walking, quite subsconsciously I think, only concentrating on one
eye when trying to read or get a detailed look at something closeup.
> >
> > I only realised my eyes were not normal when asked to read a letter card
with different size letters on it at the opticians with BOTH eyes together as I
did not understand what they meant, being unable to synchronise both eyes to
look at the card simultaneously. I would just look at the card using my best
eye!
> >
> > I can only look out of one eye or the other at the same time and tend to
"forget" about the eye that I am not using at the time.
> >
> > What is a vestibular problem?
> >
> > Hope this helps?
> > Pat
> >   ----- Original Message -----
> >   From: claradesaintalbin@
> >   To: duanes@yahoogroups.com
> >   Sent: Friday, November 13, 2009 10:46 AM
> >   Subject: Re: [duane's] for Pat
> >
> >
> >
> >   Hello again Pat : I just wanted to know if you ever had balance problems
like running into the walls or if you walked late? My daughter has a vestibular
problem linked to he deaf ear (left) and I would like to know if others have
experienced it.
> >   Thank you!
> >
> >   Clara
> >
> >   ----- Mail Original -----
> >   De: "Pat Smith" <patsmith21@>
> >   À: duanes@yahoogroups.com
> >   Envoyé: Vendredi 13 Novembre 2009 10h52:09 GMT +01:00 Amsterdam / Berlin
/ Berne / Rome / Stockholm / Vienne
> >   Objet: Re: [duane's] teasing/ response to Carrie
> >
> >   
> >   Hello everyone
> >
> >   Further to my post, I want to say how much I have appreciated this group
since I joined it and it makes me feel less of a freak because of my eye
condition which I did not understand anything about until so relatively
recently. My parents never discussed it with me and I do not recall getting
satisfactory answers if I did ask them about it.
> >
> >   I do hope all those who seek advice and treatment in this day and age will
receive successful remedial surgery. I know that my left eye does not match my
right eye when I look into a mirror and if I try to turn my eyes to the right,
my left Duane's eye goes into the right hand corner near my nose. Looking the
other way, I cannot get my left eye to go much to the left side of my face
beyond midline. I have never understood what a head turn is that is mentioned on
this site, as nothing I can do will align my eyes so that I can get binocular
vision.
> >
> >   All this sounds double dutch to those who do not have the problem, but I
have gained great understanding of my condition from reading the different posts
on this site.
> >
> >   I can say that I have had a fulfilling life with a responsible job and
lots of interests. At least I can hear out of one of my ears and am not totally
deaf! Family history research has revealed that both my Mother's siblings who
lived into adult hood were totally deaf in both ears so could not speak, being
described in those days as being "deaf and dumb". Further back in my Mother's
ancestry, on the maternal side, there were "deaf and dumb" siblings in one
family too.
> >
> >   Is Duane's hereditary?
> >
> >   With very best wishes to all.
> >
> >   Pat
> >
> >   ----- Original Message -----
> >   From: claradesaintalbin@
> >   To: duanes@yahoogroups.com
> >   Sent: Friday, November 13, 2009 9:31 AM
> >   Subject: Re: [duane's] teasing/ response to Carrie
> >
> >   Hello every one,
> >
> >   be very careful and confirm with a surgeon what exactly you expect from
surgery if you wish to take that decision.
> >   If your son :
> >   - has his eyes straight when he looks in front of him
> >   - if the Duane's is only noticeable when he looks to the side
> >   - and he dosen't have a head turn,
> >   => the surgery might not be the right solution because those the symptoms
that it can cure.
> >   If you talk to the surgeon, insist that your son is expecting a good
aesthetical result, he will tell you if it can be done. You have to make sure
your son doesn't put all his hope in it if it can be disappointing...
> >   Wish you the best!
> >
> >   Clara
> >
> >   ----- Mail Original -----
> >   De: "Pat Smith" < patsmith21@ >
> >   À: duanes@yahoogroups.com
> >   Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin /
Berne / Rome / Stockholm / Vienne
> >   Objet: Re: [duane's] teasing/ response to Carrie
> >
> >   
> >   This is probably why I was teased at school because my Duanes eye looks
different! I never realised it at the time but I did get some respite when my
Mother went to the school and discussed my plight with the headmaster and I was
moved to another class where all my friends were and given the chance to
progress with my studies and make something of my life, which otherwise would
have been very difficult, I suppose. I needed encouragement!
> >
> >   My Mother never told me I had Duanes, it was only when I was examined by
an eye consultant a few years ago that I found out why I do not have binocular
vision and have to look either out of one eye or the other, but not both
together! Took nearly a lifetime to get the mystery solved!
> >
> >   I did have surgery as a child in the 1940's but this only improved things
and was not a cure, but I do not know why as my parents are both dead and I
cannot ask them about it any more, sadly.
> >
> >   Pat
> >
> >   ----- Original Message -----
> >   From: Jennifer Babek
> >   To: duanes@yahoogroups.com
> >   Sent: Thursday, November 12, 2009 3:12 PM
> >   Subject: Re: [duane's] teasing/ response to Carrie
> >
> >   First, let me warn you. This is my soapbox subject and I can go on and on
about it. I’m a 35 year old with Duane’s and know exactly what your son is
going through. I hid that teasing was happening until it became unbearable. I
was teased throughout my childhood, especially in high school, about my eye. The
teasing influenced by career choice and I’m now a therapist that works with
youth to assist them and their families deal with such issues. Like your son, I
also requested surgery in high school and had my 3 rd surgery my Senior Year (my
surgeons didn’t know what they were doing). I had my 4 th surgery this year at
UCLA with finally good results. First, I would recommend to anyone that they
have surgery if any improvement can be gained. I’m a mom also and know how
stressful the idea of surgery can be for a parent; however, your child will be
dealing with this issue their entire life and they need to benefit from any
improvements that can be made. It’s important for him to understand that
Duane’s can’t be completely fixed and his eye may improve; however he will
still signs of Duane’s (ex. after surgery my eye is centrally aligned but I
still am not able to track to the left).
> >
> >   Dealing with teasing is such a tricky issue. Looking back I wish I
would’ve allowed my mom to talk to the teachers to get it stopped. If you talk
to the school don’t approach them with “my son is being teased”; approach
them with “my son is being harassed”. Schools pay much more attention to the
word “harassment”. If people were to say the same things to adults as
they’re saying to him it would be considered harassment. Insist that the
school do what they need to do to get it stopped. It’s very important to
discuss a plan of action so that the school doesn’t further alienate him by
handling it poorly. Many teachers do care and are very creative in the ways that
they can get the harassment to stop. There are several moms of teens that post
at times. Keep posting until you can find a parent of a teen that would be
willing to arrange communication between your son and their child. Back then, I
didn’t have the benefit of the internet and would’ve greatly benefited from
talking to another teen with Duane’s. Encourage your son to stay involved an
anything that he can. If he begins to isolate himself it will only make things
much worse and as a parent it’s important that you watch for this. Help him
understand that when he’s being harassed that “fight or flight” kicks in;
which can cause feelings of wanting to get away from it all. He shouldn’t
fight; but he shouldn’t isolate himself either. Isolation causes depression
and promotes an unhealthy focus on his issue. Getting involved in many
activities will help. As a parent, don’t ever minimize his feelings and
don’t ever tell him to just ignore it (common advice but impossible to do).
Provide support, listen, and make sure that he knows you’re in his corner and
will do anything you can to help. Let him know that for me the teasing almost
completely stopped when I began college. I still had some comments but they were
few in far between. I hope this is somewhat helpful. Please let me know if
there’s anything else I can do to help. Jennifer
> >
> >   From: Carrie Mitchel < ccmitchel73@ >
> >   To: duanes@yahoogroups.com
> >   Sent: Wed, November 11, 2009 10:51:39 PM
> >   Subject: Re: [duane's] hearing problems and Duane's
> >
> >   Somebody please help!!! My son who is 15 years old now is asking if he can
have surgery on his eye. He was diagnosed before he was 2. He has duanes type I
in his right eye and I didn't ever think that it bothered him until tonite when
he asked me if he could get it fixed, apparently he is being teased at school
about it. Is there any support groups out there for teens?? What can I do??????
Please help!!!!
> >
> >   Desperate
> >
> >   Mama
> >   Carrie
> >
> >   From: Liane Herbst <liane@citylineinc. com>
> >   To: duanes@yahoogroups. com
> >   Sent: Wed, November 11, 2009 9:28:31 AM
> >   Subject: Re: [duane's] hearing problems and Duane's
> >
> >   I have bilateral hearing loss in the lowest registers --- hasn't
interfered with my life at all, but the docs think it is probably related to my
bilateral Duane's.
> >
> >   -- Liane
> >
> >   ----- Original Message -----
> >   From: Villette1
> >   To: duanes@yahoogroups. com
> >   Sent: Tuesday, November 10, 2009 7:56 AM
> >   Subject: [duane's] hearing problems and Duane's
> >
> >   Dear Markia,
> >
> >   I am 31 now, Type II Duane's. I have had a hearing problem since birth and
now that I have been to several doctors, I know that it is related to the
Duane's. So, yes, some Duane's patients also have hearing loss. Don't be
alarmed. Just do the best you can for your daughter and find competent
physicians and hang in there.
> >
> >   Cheers,
> >   Amy Crawford
> >
>

Hi Carrie -
You've gotten some good ideas from the group, and I think your suggestion for
your son to talk about it with his close friends is excellent. Just to add my 2
cents on a couple of things...

Keep in mind that he can get support from other teens who don't have exactly the
same eye problem that he has. Duanes is fairly rare, but other types of
strabismus are actually quite common. He could also get support by talking with
peers who have some other "irregularity" that's noticeable and that other kids
would comment or tease about.

When we talk about "head turn" we mean that a person holds his/her head turned
to one side in order to look straight ahead. It sounds like your son doesn't do
this. What I think you're talking about is that when your son looks to the side,
the non-Duanes eye turns but the Duanes eye doesn't, so it looks like his eyes
are crossed.

He might want to practice turning his head to look to the side instead of
turning his eyes, which would make his Duanes less noticeable. He (or you) could
talk privately with his teachers and ask for him to be seated in the part of the
classroom that's best for him. In informal situations (like lunch), he can plan
ahead to seat himself in a position that requires less eye-turning to see the
other people. These techniques will be useful throughout his life, at school,
work, and social gatherings. For example, when I go to a business meeting, I
check where the main speaker is going to be, and if there's going to be a
projected presentation I check where the screen is, and I try to choose a seat
that will work well for me.

By the way, your son is welcome to join this Yahoo group, or he can read it
without joining. He can just ignore the posts that aren't relevant to him. If he
searches on words like school, teacher, teasing or teen, he might find some
posts that he can relate to.

Best -
Calantha
calanthaa@...


--- In duanes@yahoogroups.com, Carrie Mitchel <ccmitchel73@...> wrote:
>
> Jennifer,
> Thank you so much for your words of encouragement. I have always made sure
that my son is
> very involved in anything he shows an interest in. He excelled in football and
is now involved
> in a powerlifting class at school. I had a talk with him last night and
suggested that he have a
> talk with his closest friends and tell them that the teasing is hurtful. He
has always played it off
> as a joke until now(or at least thats what I thought). He never developed a
head turn so when
> he looks to the right his "good" eye crosses. That is where all of the
teasing comes from. If it weren't
> for that you couldn't even tell that he has it.  When he was
diagnosed before he was a year old the
> doctors told me that there was nothing that could be done. We do not have
insurance so I'm wondering
> how much the surgery will cost and if it would be worth it in the long run.
We would do anything for
> him to make his life better, I just hesitate to put him through surgery when
there is a chance that it
> won't make any difference or worst case make it worse. I will continue to post
and hopefully
> find someone with a teen that he could talk to. Thank you again and God Bless!
> Carrie
>   Carrie
>
>
>
>
> ________________________________
> From: Jennifer Babek <jbabek@...>
> To: duanes@yahoogroups.com
> Sent: Thu, November 12, 2009 9:12:17 AM
> Subject: Re: [duane's] teasing/ response to Carrie
>
>  
> First, let me warn you. This is my soapbox subject and I can go on and on
about it. I’m a 35 year old with Duane’s and know exactly what your son is
going through. I hid that teasing was happening until it became unbearable. I
was teased throughout my childhood, especially in high school, about my eye. 
The teasing influenced by career choice and I’m now a therapist that works
with youth to assist them and their families deal with such issues.   Like
your son, I also requested surgery in high school and had my 3rd surgery my
Senior Year (my surgeons didn’t know what they were doing). I had my 4th
surgery this year at UCLA with finally good results. First, I would recommend to
anyone that they have surgery if any improvement can be gained. I’m a mom also
and know how stressful the idea of surgery can be for a parent; however, your
child will be dealing with this issue their entire life and they need to benefit
from any improvements that can
>  be made. It’s important for him to understand that Duane’s can’t be
completely fixed and his eye may improve; however he will still signs of
Duane’s (ex. after surgery my eye is centrally aligned but I still am not able
to track to the left).
> Dealing with teasing is such a tricky issue. Looking back I wish I would’ve
allowed my mom to talk to the teachers to get it stopped.  If you talk to the
school don’t approach them with “my son is being teased”; approach them
with “my son is being harassed”. Schools pay much more attention to the word
“harassment”. If people were to say the same things to adults as they’re
saying to him it would be considered harassment.  Insist that the school do
what they need to do to get it stopped. It’s very important to discuss a plan
of action so that the school doesn’t further alienate him by handling it
poorly.  Many teachers do care and are very creative in the ways that they can
get the harassment to stop.  There are several moms of teens that post at
times. Keep posting until you can find a parent of a teen that would be willing
to arrange communication between your son and their child. Back then, I didn’t
have the benefit of the
>  internet and would’ve greatly benefited from talking to another teen with
Duane’s. Encourage your son to stay involved an anything that he can. If he
begins to isolate himself it will only make things much worse and as a parent
it’s important that you watch for this. Help him understand that when he’s
being harassed that “fight or flight” kicks in; which can cause feelings of
wanting to get away from it all. He shouldn’t fight; but he shouldn’t
isolate himself either.  Isolation causes depression and promotes an unhealthy
focus on his issue. Getting involved in many activities will help. As a parent,
don’t ever minimize his feelings and don’t ever tell him to just ignore it
(common advice but impossible to do). Provide support, listen, and make sure
that he knows you’re in his corner and will do anything you can to help. Let
him know that for me the teasing almost completely stopped when I began college.
I still had some comments
>  but they were few in far between.  I hope this is somewhat helpful. Please
let me know if there’s anything else I can do to help. Jennifer
>
>
>
> ________________________________
> From: Carrie Mitchel <ccmitchel73@ yahoo.com>
> To: duanes@yahoogroups. com
> Sent: Wed, November 11, 2009 10:51:39 PM
> Subject: Re: [duane's] hearing problems and Duane's
>
>  
> Somebody please help!!! My son who is 15 years old now is asking if he can
have surgery on his eye. He was diagnosed before he was 2. He has duanes type I
in his right eye and I didn't ever think that it bothered him until tonite when
he asked me if he could get it fixed, apparently he is being teased at school
about it. Is there any support groups out there for teens?? What can I do??????
Please help!!!!
>
> Desperate 
>
> Mama
>   Carrie
>
>
>
>
> ________________________________
> From: Liane Herbst <liane@citylineinc. com>
> To: duanes@yahoogroups. com
> Sent: Wed, November 11, 2009 9:28:31 AM
> Subject: Re: [duane's] hearing problems and Duane's
>
>  
> I have bilateral hearing loss in the lowest registers --- hasn't interfered
with my life at all, but the docs think it is probably related to my bilateral
Duane's.
>  
> -- Liane
> ----- Original Message -----
> >From: Villette1
> >To: duanes@yahoogroups. com
> >Sent: Tuesday, November 10, 2009 7:56 AM
> >Subject: [duane's] hearing problems and Duane's
> >
> > 
> >Dear Markia,
> >
> >I am 31 now, Type II Duane's. I have had a hearing problem since birth and
now that I have been to several doctors, I know that it is related to the
Duane's. So, yes, some Duane's patients also have hearing loss. Don't be
alarmed. Just do the best you can for your daughter and find competent
physicians and hang in there.
> >
> >Cheers,
> >Amy Crawford
> >
> >
>

 

Does anyone feel that either their own or their child's eyes sometimes look straight when looking straight ahead and other times don't? My daughter seems to sometimes have symmetry in both eyes when looking straight and other times one or the other eye will be turned in. She has Duane's type I in both eyes, with the left greater than the right. I'm confused by why they appear straight sometimes and not others. Maybe she's not actually looking straight ahead, but appears to me that she is when I notice the crossing.

Thanks,
Becky

--- In duanes@yahoogroups.com, "Pat Smith" <patsmith21@...> wrote:
>
> Thanks Clara - your comments are much appreciated.
> Pat
> ----- Original Message -----
> From: claradesaintalbin@...
> To: duanes@yahoogroups.com
> Sent: Friday, November 13, 2009 10:40 AM
> Subject: Re: [duane's] teasing/ response to Carrie
>
>
>
> Hello Pat,
>
> Duane's is definitely linked to genetics witch can make it transmittable from a generation to another. However, it is not clear exactly how and to what extend it is transmittable. For example, my daughter is apparently the only one in the family to have such problems. But we may have had ancestors we don't know who had Duane's...
> About the head turn. My daughter tends to put her head on her right shoulder, facing slightly upward so that she can look to her left side using her left eye turned downward in the orbit (as it cannot turn to the left because of Duane's). I don't know if I'm making it clear.
> Have a nice day!
>
> Clara
>
> ----- Mail Original -----
> De: "Pat Smith" <patsmith21@...>
> À: duanes@yahoogroups.com
> Envoyé: Vendredi 13 Novembre 2009 10h52:09 GMT +01:00 Amsterdam / Berlin / Berne / Rome / Stockholm / Vienne
> Objet: Re: [duane's] teasing/ response to Carrie
>
> 
> Hello everyone
>
> Further to my post, I want to say how much I have appreciated this group since I joined it and it makes me feel less of a freak because of my eye condition which I did not understand anything about until so relatively recently. My parents never discussed it with me and I do not recall getting satisfactory answers if I did ask them about it.
>
> I do hope all those who seek advice and treatment in this day and age will receive successful remedial surgery. I know that my left eye does not match my right eye when I look into a mirror and if I try to turn my eyes to the right, my left Duane's eye goes into the right hand corner near my nose. Looking the other way, I cannot get my left eye to go much to the left side of my face beyond midline. I have never understood what a head turn is that is mentioned on this site, as nothing I can do will align my eyes so that I can get binocular vision.
>
> All this sounds double dutch to those who do not have the problem, but I have gained great understanding of my condition from reading the different posts on this site.
>
> I can say that I have had a fulfilling life with a responsible job and lots of interests. At least I can hear out of one of my ears and am not totally deaf! Family history research has revealed that both my Mother's siblings who lived into adult hood were totally deaf in both ears so could not speak, being described in those days as being "deaf and dumb". Further back in my Mother's ancestry, on the maternal side, there were "deaf and dumb" siblings in one family too.
>
> Is Duane's hereditary?
>
> With very best wishes to all.
>
> Pat
>
> ----- Original Message -----
> From: claradesaintalbin@...
> To: duanes@yahoogroups.com
> Sent: Friday, November 13, 2009 9:31 AM
> Subject: Re: [duane's] teasing/ response to Carrie
>
> Hello every one,
>
> be very careful and confirm with a surgeon what exactly you expect from surgery if you wish to take that decision.
> If your son :
> - has his eyes straight when he looks in front of him
> - if the Duane's is only noticeable when he looks to the side
> - and he dosen't have a head turn,
> => the surgery might not be the right solution because those the symptoms that it can cure.
> If you talk to the surgeon, insist that your son is expecting a good aesthetical result, he will tell you if it can be done. You have to make sure your son doesn't put all his hope in it if it can be disappointing...
> Wish you the best!
>
> Clara
>
> ----- Mail Original -----
> De: "Pat Smith" < patsmith21@... >
> À: duanes@yahoogroups.com
> Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin / Berne / Rome / Stockholm / Vienne
> Objet: Re: [duane's] teasing/ response to Carrie
>
> 
> This is probably why I was teased at school because my Duanes eye looks different! I never realised it at the time but I did get some respite when my Mother went to the school and discussed my plight with the headmaster and I was moved to another class where all my friends were and given the chance to progress with my studies and make something of my life, which otherwise would have been very difficult, I suppose. I needed encouragement!
>
> My Mother never told me I had Duanes, it was only when I was examined by an eye consultant a few years ago that I found out why I do not have binocular vision and have to look either out of one eye or the other, but not both together! Took nearly a lifetime to get the mystery solved!
>
> I did have surgery as a child in the 1940's but this only improved things and was not a cure, but I do not know why as my parents are both dead and I cannot ask them about it any more, sadly.
>
> Pat
>
> ----- Original Message -----
> From: Jennifer Babek
> To: duanes@yahoogroups.com
> Sent: Thursday, November 12, 2009 3:12 PM
> Subject: Re: [duane's] teasing/ response to Carrie
>
> First, let me warn you. This is my soapbox subject and I can go on and on about it. I’m a 35 year old with Duane’s and know exactly what your son is going through. I hid that teasing was happening until it became unbearable. I was teased throughout my childhood, especially in high school, about my eye. The teasing influenced by career choice and I’m now a therapist that works with youth to assist them and their families deal with such issues. Like your son, I also requested surgery in high school and had my 3 rd surgery my Senior Year (my surgeons didn’t know what they were doing). I had my 4 th surgery this year at UCLA with finally good results. First, I would recommend to anyone that they have surgery if any improvement can be gained. I’m a mom also and know how stressful the idea of surgery can be for a parent; however, your child will be dealing with this issue their entire life and they need to benefit from any improvements that can be made. It’s important for him to understand that Duane’s can’t be completely fixed and his eye may improve; however he will still signs of Duane’s (ex. after surgery my eye is centrally aligned but I still am not able to track to the left).
>
> Dealing with teasing is such a tricky issue. Looking back I wish I would’ve allowed my mom to talk to the teachers to get it stopped. If you talk to the school don’t approach them with “my son is being teased”; approach them with “my son is being harassed”. Schools pay much more attention to the word “harassment”. If people were to say the same things to adults as they’re saying to him it would be considered harassment. Insist that the school do what they need to do to get it stopped. It’s very important to discuss a plan of action so that the school doesn’t further alienate him by handling it poorly. Many teachers do care and are very creative in the ways that they can get the harassment to stop. There are several moms of teens that post at times. Keep posting until you can find a parent of a teen that would be willing to arrange communication between your son and their child. Back then, I didn’t have the benefit of the internet and would’ve greatly benefited from talking to another teen with Duane’s. Encourage your son to stay involved an anything that he can. If he begins to isolate himself it will only make things much worse and as a parent it’s important that you watch for this. Help him understand that when he’s being harassed that “fight or flight” kicks in; which can cause feelings of wanting to get away from it all. He shouldn’t fight; but he shouldn’t isolate himself either. Isolation causes depression and promotes an unhealthy focus on his issue. Getting involved in many activities will help. As a parent, don’t ever minimize his feelings and don’t ever tell him to just ignore it (common advice but impossible to do). Provide support, listen, and make sure that he knows you’re in his corner and will do anything you can to help. Let him know that for me the teasing almost completely stopped when I began college. I still had some comments but they were few in far between. I hope this is somewhat helpful. Please let me know if there’s anything else I can do to help. Jennifer
>
> From: Carrie Mitchel < ccmitchel73@... >
> To: duanes@yahoogroups.com
> Sent: Wed, November 11, 2009 10:51:39 PM
> Subject: Re: [duane's] hearing problems and Duane's
>
> Somebody please help!!! My son who is 15 years old now is asking if he can have surgery on his eye. He was diagnosed before he was 2. He has duanes type I in his right eye and I didn't ever think that it bothered him until tonite when he asked me if he could get it fixed, apparently he is being teased at school about it. Is there any support groups out there for teens?? What can I do?????? Please help!!!!
>
> Desperate
>
> Mama
> Carrie
>
> From: Liane Herbst <liane@citylineinc. com>
> To: duanes@yahoogroups. com
> Sent: Wed, November 11, 2009 9:28:31 AM
> Subject: Re: [duane's] hearing problems and Duane's
>
> I have bilateral hearing loss in the lowest registers --- hasn't interfered with my life at all, but the docs think it is probably related to my bilateral Duane's.
>
> -- Liane
>
> ----- Original Message -----
> From: Villette1
> To: duanes@yahoogroups. com
> Sent: Tuesday, November 10, 2009 7:56 AM
> Subject: [duane's] hearing problems and Duane's
>
> Dear Markia,
>
> I am 31 now, Type II Duane's. I have had a hearing problem since birth and now that I have been to several doctors, I know that it is related to the Duane's. So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do the best you can for your daughter and find competent physicians and hang in there.
>
> Cheers,
> Amy Crawford
>

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Does anyone feel that either their own or their child's eyes sometimes look
straight when looking straight ahead and other times don't?  My daughter seems
to sometimes have symmetry in both eyes when looking straight and other times
one or the other eye will be turned in.  She has Duane's type I in both eyes,
with the left greater than the right.  I'm confused by why they appear straight
sometimes and not others.  Maybe she's not actually looking straight ahead, but
appears to me that she is when I notice the crossing.

Thanks,
Becky

--- In duanes@yahoogroups.com, "Pat Smith" <patsmith21@...> wrote:
>
> Thanks Clara - your comments are much appreciated.
> Pat
>   ----- Original Message -----
>   From: claradesaintalbin@...
>   To: duanes@yahoogroups.com
>   Sent: Friday, November 13, 2009 10:40 AM
>   Subject: Re: [duane's] teasing/ response to Carrie
>
>
>
>   Hello Pat,
>
>   Duane's is definitely linked to genetics witch can make it transmittable
from a generation to another. However, it is not clear exactly how and to what
extend it is transmittable. For example, my daughter is apparently the only one
in the family to have such problems. But we may have had ancestors we don't know
who had Duane's...
>   About the head turn. My daughter tends to put her head on her right
shoulder, facing slightly upward so that she can look to her left side using her
left eye turned downward in the orbit (as it cannot turn to the left because of
Duane's). I don't know if I'm making it clear.
>   Have a nice day!
>
>   Clara
>
>   ----- Mail Original -----
>   De: "Pat Smith" <patsmith21@...>
>   À: duanes@yahoogroups.com
>   Envoyé: Vendredi 13 Novembre 2009 10h52:09 GMT +01:00 Amsterdam / Berlin /
Berne / Rome / Stockholm / Vienne
>   Objet: Re: [duane's] teasing/ response to Carrie
>
>   
>   Hello everyone
>
>   Further to my post, I want to say how much I have appreciated this group
since I joined it and it makes me feel less of a freak because of my eye
condition which I did not understand anything about until so relatively
recently. My parents never discussed it with me and I do not recall getting
satisfactory answers if I did ask them about it.
>
>   I do hope all those who seek advice and treatment in this day and age will
receive successful remedial surgery. I know that my left eye does not match my
right eye when I look into a mirror and if I try to turn my eyes to the right,
my left Duane's eye goes into the right hand corner near my nose. Looking the
other way, I cannot get my left eye to go much to the left side of my face
beyond midline. I have never understood what a head turn is that is mentioned on
this site, as nothing I can do will align my eyes so that I can get binocular
vision.
>
>   All this sounds double dutch to those who do not have the problem, but I
have gained great understanding of my condition from reading the different posts
on this site.
>
>   I can say that I have had a fulfilling life with a responsible job and lots
of interests. At least I can hear out of one of my ears and am not totally deaf!
Family history research has revealed that both my Mother's siblings who lived
into adult hood were totally deaf in both ears so could not speak, being
described in those days as being "deaf and dumb". Further back in my Mother's
ancestry, on the maternal side, there were "deaf and dumb" siblings in one
family too.
>
>   Is Duane's hereditary?
>
>   With very best wishes to all.
>
>   Pat
>
>   ----- Original Message -----
>   From: claradesaintalbin@...
>   To: duanes@yahoogroups.com
>   Sent: Friday, November 13, 2009 9:31 AM
>   Subject: Re: [duane's] teasing/ response to Carrie
>
>   Hello every one,
>
>   be very careful and confirm with a surgeon what exactly you expect from
surgery if you wish to take that decision.
>   If your son :
>   - has his eyes straight when he looks in front of him
>   - if the Duane's is only noticeable when he looks to the side
>   - and he dosen't have a head turn,
>   => the surgery might not be the right solution because those the symptoms
that it can cure.
>   If you talk to the surgeon, insist that your son is expecting a good
aesthetical result, he will tell you if it can be done. You have to make sure
your son doesn't put all his hope in it if it can be disappointing...
>   Wish you the best!
>
>   Clara
>
>   ----- Mail Original -----
>   De: "Pat Smith" < patsmith21@... >
>   À: duanes@yahoogroups.com
>   Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin /
Berne / Rome / Stockholm / Vienne
>   Objet: Re: [duane's] teasing/ response to Carrie
>
>   
>   This is probably why I was teased at school because my Duanes eye looks
different! I never realised it at the time but I did get some respite when my
Mother went to the school and discussed my plight with the headmaster and I was
moved to another class where all my friends were and given the chance to
progress with my studies and make something of my life, which otherwise would
have been very difficult, I suppose. I needed encouragement!
>
>   My Mother never told me I had Duanes, it was only when I was examined by an
eye consultant a few years ago that I found out why I do not have binocular
vision and have to look either out of one eye or the other, but not both
together! Took nearly a lifetime to get the mystery solved!
>
>   I did have surgery as a child in the 1940's but this only improved things
and was not a cure, but I do not know why as my parents are both dead and I
cannot ask them about it any more, sadly.
>
>   Pat
>
>   ----- Original Message -----
>   From: Jennifer Babek
>   To: duanes@yahoogroups.com
>   Sent: Thursday, November 12, 2009 3:12 PM
>   Subject: Re: [duane's] teasing/ response to Carrie
>
>   First, let me warn you. This is my soapbox subject and I can go on and on
about it. I’m a 35 year old with Duane’s and know exactly what your son is
going through. I hid that teasing was happening until it became unbearable. I
was teased throughout my childhood, especially in high school, about my eye. The
teasing influenced by career choice and I’m now a therapist that works with
youth to assist them and their families deal with such issues. Like your son, I
also requested surgery in high school and had my 3 rd surgery my Senior Year (my
surgeons didn’t know what they were doing). I had my 4 th surgery this year at
UCLA with finally good results. First, I would recommend to anyone that they
have surgery if any improvement can be gained. I’m a mom also and know how
stressful the idea of surgery can be for a parent; however, your child will be
dealing with this issue their entire life and they need to benefit from any
improvements that can be made. It’s important for him to understand that
Duane’s can’t be completely fixed and his eye may improve; however he will
still signs of Duane’s (ex. after surgery my eye is centrally aligned but I
still am not able to track to the left).
>
>   Dealing with teasing is such a tricky issue. Looking back I wish I
would’ve allowed my mom to talk to the teachers to get it stopped. If you talk
to the school don’t approach them with “my son is being teased”; approach
them with “my son is being harassed”. Schools pay much more attention to the
word “harassment”. If people were to say the same things to adults as
they’re saying to him it would be considered harassment. Insist that the
school do what they need to do to get it stopped. It’s very important to
discuss a plan of action so that the school doesn’t further alienate him by
handling it poorly. Many teachers do care and are very creative in the ways that
they can get the harassment to stop. There are several moms of teens that post
at times. Keep posting until you can find a parent of a teen that would be
willing to arrange communication between your son and their child. Back then, I
didn’t have the benefit of the internet and would’ve greatly benefited from
talking to another teen with Duane’s. Encourage your son to stay involved an
anything that he can. If he begins to isolate himself it will only make things
much worse and as a parent it’s important that you watch for this. Help him
understand that when he’s being harassed that “fight or flight” kicks in;
which can cause feelings of wanting to get away from it all. He shouldn’t
fight; but he shouldn’t isolate himself either. Isolation causes depression
and promotes an unhealthy focus on his issue. Getting involved in many
activities will help. As a parent, don’t ever minimize his feelings and
don’t ever tell him to just ignore it (common advice but impossible to do).
Provide support, listen, and make sure that he knows you’re in his corner and
will do anything you can to help. Let him know that for me the teasing almost
completely stopped when I began college. I still had some comments but they were
few in far between. I hope this is somewhat helpful. Please let me know if
there’s anything else I can do to help. Jennifer
>
>   From: Carrie Mitchel < ccmitchel73@... >
>   To: duanes@yahoogroups.com
>   Sent: Wed, November 11, 2009 10:51:39 PM
>   Subject: Re: [duane's] hearing problems and Duane's
>
>   Somebody please help!!! My son who is 15 years old now is asking if he can
have surgery on his eye. He was diagnosed before he was 2. He has duanes type I
in his right eye and I didn't ever think that it bothered him until tonite when
he asked me if he could get it fixed, apparently he is being teased at school
about it. Is there any support groups out there for teens?? What can I do??????
Please help!!!!
>
>   Desperate
>
>   Mama
>   Carrie
>
>   From: Liane Herbst <liane@citylineinc. com>
>   To: duanes@yahoogroups. com
>   Sent: Wed, November 11, 2009 9:28:31 AM
>   Subject: Re: [duane's] hearing problems and Duane's
>
>   I have bilateral hearing loss in the lowest registers --- hasn't interfered
with my life at all, but the docs think it is probably related to my bilateral
Duane's.
>
>   -- Liane
>
>   ----- Original Message -----
>   From: Villette1
>   To: duanes@yahoogroups. com
>   Sent: Tuesday, November 10, 2009 7:56 AM
>   Subject: [duane's] hearing problems and Duane's
>
>   Dear Markia,
>
>   I am 31 now, Type II Duane's. I have had a hearing problem since birth and
now that I have been to several doctors, I know that it is related to the
Duane's. So, yes, some Duane's patients also have hearing loss. Don't be
alarmed. Just do the best you can for your daughter and find competent
physicians and hang in there.
>
>   Cheers,
>   Amy Crawford
>

----- Original Message -----

From: claradesaintalbin@...

To: duanes@yahoogroups.com

Sent: Friday, November 13, 2009 10:40 AM

Subject: Re: [duane's] teasing/ response to Carrie

 

Hello Pat,

Duane's is definitely linked to genetics witch can make it transmittable from a generation to another. However, it is not clear exactly how and to what extend it is transmittable. For example, my daughter is apparently the only one in the family to have such problems. But we may have had ancestors we don't know who had Duane's...
About the head turn. My daughter tends to put her head on her right shoulder, facing slightly upward so that she can look to her left side using her left eye turned downward in the orbit (as it cannot turn to the left because of Duane's). I don't know if I'm making it clear.
Have a nice day!

Clara

----- Mail Original -----
De: "Pat Smith" <patsmith21@ukonline.co.uk>
À: duanes@yahoogroups.com
Envoyé: Vendredi 13 Novembre 2009 10h52:09 GMT +01:00 Amsterdam / Berlin / Berne / Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie


Hello everyone

Further to my post, I want to say how much I have appreciated this group since I joined it and it makes me feel less of a freak because of my eye condition which I did not understand anything about until so relatively recently. My parents never discussed it with me and I do not recall getting satisfactory answers if I did ask them about it.

I do hope all those who seek advice and treatment in this day and age will receive successful remedial surgery. I know that my left eye does not match my right eye when I look into a mirror and if I try to turn my eyes to the right, my left Duane's eye goes into the right hand corner near my nose. Looking the other way, I cannot get my left eye to go much to the left side of my face beyond midline. I have never understood what a head turn is that is mentioned on this site, as nothing I can do will align my eyes so that I can get binocular vision.

All this sounds double dutch to those who do not have the problem, but I have gained great understanding of my condition from reading the different posts on this site.

I can say that I have had a fulfilling life with a responsible job and lots of interests. At least I can hear out of one of my ears and am not totally deaf! Family history research has revealed that both my Mother's siblings who lived into adult hood were totally deaf in both ears so could not speak, being described in those days as being "deaf and dumb". Further back in my Mother's ancestry, on the maternal side, there were "deaf and dumb" siblings in one family too.

Is Duane's hereditary?

With very best wishes to all.

Pat

----- Original Message -----
From: claradesaintalbin@free.fr
To: duanes@yahoogroups.com
Sent: Friday, November 13, 2009 9:31 AM
Subject: Re: [duane's] teasing/ response to Carrie

Hello every one,

be very careful and confirm with a surgeon what exactly you expect from surgery if you wish to take that decision.
If your son :
- has his eyes straight when he looks in front of him
- if the Duane's is only noticeable when he looks to the side
- and he dosen't have a head turn,
=> the surgery might not be the right solution because those the symptoms that it can cure.
If you talk to the surgeon, insist that your son is expecting a good aesthetical result, he will tell you if it can be done. You have to make sure your son doesn't put all his hope in it if it can be disappointing...
Wish you the best!

Clara

----- Mail Original -----
De: "Pat Smith" < patsmith21@ukonline.co.uk >
À: duanes@yahoogroups.com
Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin / Berne / Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie


This is probably why I was teased at school because my Duanes eye looks different! I never realised it at the time but I did get some respite when my Mother went to the school and discussed my plight with the headmaster and I was moved to another class where all my friends were and given the chance to progress with my studies and make something of my life, which otherwise would have been very difficult, I suppose. I needed encouragement!

My Mother never told me I had Duanes, it was only when I was examined by an eye consultant a few years ago that I found out why I do not have binocular vision and have to look either out of one eye or the other, but not both together! Took nearly a lifetime to get the mystery solved!

I did have surgery as a child in the 1940's but this only improved things and was not a cure, but I do not know why as my parents are both dead and I cannot ask them about it any more, sadly.

Pat

----- Original Message -----
From: Jennifer Babek
To: duanes@yahoogroups.com
Sent: Thursday, November 12, 2009 3:12 PM
Subject: Re: [duane's] teasing/ response to Carrie

First, let me warn you. This is my soapbox subject and I can go on and on about it. I’m a 35 year old with Duane’s and know exactly what your son is going through. I hid that teasing was happening until it became unbearable. I was teased throughout my childhood, especially in high school, about my eye. The teasing influenced by career choice and I’m now a therapist that works with youth to assist them and their families deal with such issues. Like your son, I also requested surgery in high school and had my 3 rd surgery my Senior Year (my surgeons didn’t know what they were doing). I had my 4 th surgery this year at UCLA with finally good results. First, I would recommend to anyone that they have surgery if any improvement can be gained. I’m a mom also and know how stressful the idea of surgery can be for a parent; however, your child will be dealing with this issue their entire life and they need to benefit from any improvements that can be made. It’s important for him to understand that Duane’s can’t be completely fixed and his eye may improve; however he will still signs of Duane’s (ex. after surgery my eye is centrally aligned but I still am not able to track to the left).

Dealing with teasing is such a tricky issue. Looking back I wish I would’ve allowed my mom to talk to the teachers to get it stopped. If you talk to the school don’t approach them with “my son is being teased”; approach them with “my son is being harassed”. Schools pay much more attention to the word “harassment”. If people were to say the same things to adults as they’re saying to him it would be considered harassment. Insist that the school do what they need to do to get it stopped. It’s very important to discuss a plan of action so that the school doesn’t further alienate him by handling it poorly. Many teachers do care and are very creative in the ways that they can get the harassment to stop. There are several moms of teens that post at times. Keep posting until you can find a parent of a teen that would be willing to arrange communication between your son and their child. Back then, I didn’t have the benefit of the internet and would’ve greatly benefited from talking to another teen with Duane’s. Encourage your son to stay involved an anything that he can. If he begins to isolate himself it will only make things much worse and as a parent it’s important that you watch for this. Help him understand that when he’s being harassed that “fight or flight” kicks in; which can cause feelings of wanting to get away from it all. He shouldn’t fight; but he shouldn’t isolate himself either. Isolation causes depression and promotes an unhealthy focus on his issue. Getting involved in many activities will help. As a parent, don’t ever minimize his feelings and don’t ever tell him to just ignore it (common advice but impossible to do). Provide support, listen, and make sure that he knows you’re in his corner and will do anything you can to help. Let him know that for me the teasing almost completely stopped when I began college. I still had some comments but they were few in far between. I hope this is somewhat helpful. Please let me know if there’s anything else I can do to help. Jennifer

From: Carrie Mitchel < ccmitchel73@yahoo.com >
To: duanes@yahoogroups.com
Sent: Wed, November 11, 2009 10:51:39 PM
Subject: Re: [duane's] hearing problems and Duane's

Somebody please help!!! My son who is 15 years old now is asking if he can have surgery on his eye. He was diagnosed before he was 2. He has duanes type I in his right eye and I didn't ever think that it bothered him until tonite when he asked me if he could get it fixed, apparently he is being teased at school about it. Is there any support groups out there for teens?? What can I do?????? Please help!!!!

Desperate

Mama
Carrie

From: Liane Herbst <liane@citylineinc. com>
To: duanes@yahoogroups. com
Sent: Wed, November 11, 2009 9:28:31 AM
Subject: Re: [duane's] hearing problems and Duane's

I have bilateral hearing loss in the lowest registers --- hasn't interfered with my life at all, but the docs think it is probably related to my bilateral Duane's.

-- Liane

----- Original Message -----
From: Villette1
To: duanes@yahoogroups. com
Sent: Tuesday, November 10, 2009 7:56 AM
Subject: [duane's] hearing problems and Duane's

Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now that I have been to several doctors, I know that it is related to the Duane's. So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do the best you can for your daughter and find competent physicians and hang in there.

Cheers,
Amy Crawford

Hi Clara,
I am the mother of a 15 month old son with Type 1 in his left eye and he is not
walking on a consistent basis yet.  I'm not certain how late your child is in
walking, but my child isn't exactly "late" yet, but he's definitely not setting
any records either....good luck!
Anne


--- In duanes@yahoogroups.com, "Pat Smith" <patsmith21@...> wrote:
>
> Hello Clara
>
> I don't know if I walked late as again I cannot ask my Mother about that as
she is dead. However, I have not had balance problems or of feeling dizzy and do
not recall walking into walls. Maybe my brain adjusted early so that I became
able to give obstacles a wide berth when approaching them. I can see how the
problem would arise though if I was looking out of the eye on the side away from
the obstacle, i.e. if the obstacle was to my left and I had my left eye shut
while looking out of my right eye. I would try to keep both eyes open and
looking when walking, quite subsconsciously I think, only concentrating on one
eye when trying to read or get a detailed look at something closeup.
>
> I only realised my eyes were not normal when asked to read a letter card with
different size letters on it at the opticians with BOTH eyes together as I did
not understand what they meant, being unable to synchronise both eyes to look at
the card simultaneously. I would just look at the card using my best eye!
>
> I can only look out of one eye or the other at the same time and tend to
"forget" about the eye that I am not using at the time.
>
> What is a vestibular problem?
>
> Hope this helps?
> Pat
>   ----- Original Message -----
>   From: claradesaintalbin@...
>   To: duanes@yahoogroups.com
>   Sent: Friday, November 13, 2009 10:46 AM
>   Subject: Re: [duane's] for Pat
>
>
>
>   Hello again Pat : I just wanted to know if you ever had balance problems
like running into the walls or if you walked late? My daughter has a vestibular
problem linked to he deaf ear (left) and I would like to know if others have
experienced it.
>   Thank you!
>
>   Clara
>
>   ----- Mail Original -----
>   De: "Pat Smith" <patsmith21@...>
>   À: duanes@yahoogroups.com
>   Envoyé: Vendredi 13 Novembre 2009 10h52:09 GMT +01:00 Amsterdam / Berlin /
Berne / Rome / Stockholm / Vienne
>   Objet: Re: [duane's] teasing/ response to Carrie
>
>   
>   Hello everyone
>
>   Further to my post, I want to say how much I have appreciated this group
since I joined it and it makes me feel less of a freak because of my eye
condition which I did not understand anything about until so relatively
recently. My parents never discussed it with me and I do not recall getting
satisfactory answers if I did ask them about it.
>
>   I do hope all those who seek advice and treatment in this day and age will
receive successful remedial surgery. I know that my left eye does not match my
right eye when I look into a mirror and if I try to turn my eyes to the right,
my left Duane's eye goes into the right hand corner near my nose. Looking the
other way, I cannot get my left eye to go much to the left side of my face
beyond midline. I have never understood what a head turn is that is mentioned on
this site, as nothing I can do will align my eyes so that I can get binocular
vision.
>
>   All this sounds double dutch to those who do not have the problem, but I
have gained great understanding of my condition from reading the different posts
on this site.
>
>   I can say that I have had a fulfilling life with a responsible job and lots
of interests. At least I can hear out of one of my ears and am not totally deaf!
Family history research has revealed that both my Mother's siblings who lived
into adult hood were totally deaf in both ears so could not speak, being
described in those days as being "deaf and dumb". Further back in my Mother's
ancestry, on the maternal side, there were "deaf and dumb" siblings in one
family too.
>
>   Is Duane's hereditary?
>
>   With very best wishes to all.
>
>   Pat
>
>   ----- Original Message -----
>   From: claradesaintalbin@...
>   To: duanes@yahoogroups.com
>   Sent: Friday, November 13, 2009 9:31 AM
>   Subject: Re: [duane's] teasing/ response to Carrie
>
>   Hello every one,
>
>   be very careful and confirm with a surgeon what exactly you expect from
surgery if you wish to take that decision.
>   If your son :
>   - has his eyes straight when he looks in front of him
>   - if the Duane's is only noticeable when he looks to the side
>   - and he dosen't have a head turn,
>   => the surgery might not be the right solution because those the symptoms
that it can cure.
>   If you talk to the surgeon, insist that your son is expecting a good
aesthetical result, he will tell you if it can be done. You have to make sure
your son doesn't put all his hope in it if it can be disappointing...
>   Wish you the best!
>
>   Clara
>
>   ----- Mail Original -----
>   De: "Pat Smith" < patsmith21@... >
>   À: duanes@yahoogroups.com
>   Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin /
Berne / Rome / Stockholm / Vienne
>   Objet: Re: [duane's] teasing/ response to Carrie
>
>   
>   This is probably why I was teased at school because my Duanes eye looks
different! I never realised it at the time but I did get some respite when my
Mother went to the school and discussed my plight with the headmaster and I was
moved to another class where all my friends were and given the chance to
progress with my studies and make something of my life, which otherwise would
have been very difficult, I suppose. I needed encouragement!
>
>   My Mother never told me I had Duanes, it was only when I was examined by an
eye consultant a few years ago that I found out why I do not have binocular
vision and have to look either out of one eye or the other, but not both
together! Took nearly a lifetime to get the mystery solved!
>
>   I did have surgery as a child in the 1940's but this only improved things
and was not a cure, but I do not know why as my parents are both dead and I
cannot ask them about it any more, sadly.
>
>   Pat
>
>   ----- Original Message -----
>   From: Jennifer Babek
>   To: duanes@yahoogroups.com
>   Sent: Thursday, November 12, 2009 3:12 PM
>   Subject: Re: [duane's] teasing/ response to Carrie
>
>   First, let me warn you. This is my soapbox subject and I can go on and on
about it. I’m a 35 year old with Duane’s and know exactly what your son is
going through. I hid that teasing was happening until it became unbearable. I
was teased throughout my childhood, especially in high school, about my eye. The
teasing influenced by career choice and I’m now a therapist that works with
youth to assist them and their families deal with such issues. Like your son, I
also requested surgery in high school and had my 3 rd surgery my Senior Year (my
surgeons didn’t know what they were doing). I had my 4 th surgery this year at
UCLA with finally good results. First, I would recommend to anyone that they
have surgery if any improvement can be gained. I’m a mom also and know how
stressful the idea of surgery can be for a parent; however, your child will be
dealing with this issue their entire life and they need to benefit from any
improvements that can be made. It’s important for him to understand that
Duane’s can’t be completely fixed and his eye may improve; however he will
still signs of Duane’s (ex. after surgery my eye is centrally aligned but I
still am not able to track to the left).
>
>   Dealing with teasing is such a tricky issue. Looking back I wish I
would’ve allowed my mom to talk to the teachers to get it stopped. If you talk
to the school don’t approach them with “my son is being teased”; approach
them with “my son is being harassed”. Schools pay much more attention to the
word “harassment”. If people were to say the same things to adults as
they’re saying to him it would be considered harassment. Insist that the
school do what they need to do to get it stopped. It’s very important to
discuss a plan of action so that the school doesn’t further alienate him by
handling it poorly. Many teachers do care and are very creative in the ways that
they can get the harassment to stop. There are several moms of teens that post
at times. Keep posting until you can find a parent of a teen that would be
willing to arrange communication between your son and their child. Back then, I
didn’t have the benefit of the internet and would’ve greatly benefited from
talking to another teen with Duane’s. Encourage your son to stay involved an
anything that he can. If he begins to isolate himself it will only make things
much worse and as a parent it’s important that you watch for this. Help him
understand that when he’s being harassed that “fight or flight” kicks in;
which can cause feelings of wanting to get away from it all. He shouldn’t
fight; but he shouldn’t isolate himself either. Isolation causes depression
and promotes an unhealthy focus on his issue. Getting involved in many
activities will help. As a parent, don’t ever minimize his feelings and
don’t ever tell him to just ignore it (common advice but impossible to do).
Provide support, listen, and make sure that he knows you’re in his corner and
will do anything you can to help. Let him know that for me the teasing almost
completely stopped when I began college. I still had some comments but they were
few in far between. I hope this is somewhat helpful. Please let me know if
there’s anything else I can do to help. Jennifer
>
>   From: Carrie Mitchel < ccmitchel73@... >
>   To: duanes@yahoogroups.com
>   Sent: Wed, November 11, 2009 10:51:39 PM
>   Subject: Re: [duane's] hearing problems and Duane's
>
>   Somebody please help!!! My son who is 15 years old now is asking if he can
have surgery on his eye. He was diagnosed before he was 2. He has duanes type I
in his right eye and I didn't ever think that it bothered him until tonite when
he asked me if he could get it fixed, apparently he is being teased at school
about it. Is there any support groups out there for teens?? What can I do??????
Please help!!!!
>
>   Desperate
>
>   Mama
>   Carrie
>
>   From: Liane Herbst <liane@citylineinc. com>
>   To: duanes@yahoogroups. com
>   Sent: Wed, November 11, 2009 9:28:31 AM
>   Subject: Re: [duane's] hearing problems and Duane's
>
>   I have bilateral hearing loss in the lowest registers --- hasn't interfered
with my life at all, but the docs think it is probably related to my bilateral
Duane's.
>
>   -- Liane
>
>   ----- Original Message -----
>   From: Villette1
>   To: duanes@yahoogroups. com
>   Sent: Tuesday, November 10, 2009 7:56 AM
>   Subject: [duane's] hearing problems and Duane's
>
>   Dear Markia,
>
>   I am 31 now, Type II Duane's. I have had a hearing problem since birth and
now that I have been to several doctors, I know that it is related to the
Duane's. So, yes, some Duane's patients also have hearing loss. Don't be
alarmed. Just do the best you can for your daughter and find competent
physicians and hang in there.
>
>   Cheers,
>   Amy Crawford
>

----- Original Message -----

From: claradesaintalbin@...

To: duanes@yahoogroups.com

Sent: Friday, November 13, 2009 10:46 AM

Subject: Re: [duane's] for Pat

 

Hello again Pat : I just wanted to know if you ever had balance problems like running into the walls or if you walked late? My daughter has a vestibular problem linked to he deaf ear (left) and I would like to know if others have experienced it.
Thank you!

Clara

----- Mail Original -----
De: "Pat Smith" <patsmith21@ukonline.co.uk>
À: duanes@yahoogroups.com
Envoyé: Vendredi 13 Novembre 2009 10h52:09 GMT +01:00 Amsterdam / Berlin / Berne / Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie


Hello everyone

Further to my post, I want to say how much I have appreciated this group since I joined it and it makes me feel less of a freak because of my eye condition which I did not understand anything about until so relatively recently. My parents never discussed it with me and I do not recall getting satisfactory answers if I did ask them about it.

I do hope all those who seek advice and treatment in this day and age will receive successful remedial surgery. I know that my left eye does not match my right eye when I look into a mirror and if I try to turn my eyes to the right, my left Duane's eye goes into the right hand corner near my nose. Looking the other way, I cannot get my left eye to go much to the left side of my face beyond midline. I have never understood what a head turn is that is mentioned on this site, as nothing I can do will align my eyes so that I can get binocular vision.

All this sounds double dutch to those who do not have the problem, but I have gained great understanding of my condition from reading the different posts on this site.

I can say that I have had a fulfilling life with a responsible job and lots of interests. At least I can hear out of one of my ears and am not totally deaf! Family history research has revealed that both my Mother's siblings who lived into adult hood were totally deaf in both ears so could not speak, being described in those days as being "deaf and dumb". Further back in my Mother's ancestry, on the maternal side, there were "deaf and dumb" siblings in one family too.

Is Duane's hereditary?

With very best wishes to all.

Pat

----- Original Message -----
From: claradesaintalbin@free.fr
To: duanes@yahoogroups.com
Sent: Friday, November 13, 2009 9:31 AM
Subject: Re: [duane's] teasing/ response to Carrie

Hello every one,

be very careful and confirm with a surgeon what exactly you expect from surgery if you wish to take that decision.
If your son :
- has his eyes straight when he looks in front of him
- if the Duane's is only noticeable when he looks to the side
- and he dosen't have a head turn,
=> the surgery might not be the right solution because those the symptoms that it can cure.
If you talk to the surgeon, insist that your son is expecting a good aesthetical result, he will tell you if it can be done. You have to make sure your son doesn't put all his hope in it if it can be disappointing...
Wish you the best!

Clara

----- Mail Original -----
De: "Pat Smith" < patsmith21@ukonline.co.uk >
À: duanes@yahoogroups.com
Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin / Berne / Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie


This is probably why I was teased at school because my Duanes eye looks different! I never realised it at the time but I did get some respite when my Mother went to the school and discussed my plight with the headmaster and I was moved to another class where all my friends were and given the chance to progress with my studies and make something of my life, which otherwise would have been very difficult, I suppose. I needed encouragement!

My Mother never told me I had Duanes, it was only when I was examined by an eye consultant a few years ago that I found out why I do not have binocular vision and have to look either out of one eye or the other, but not both together! Took nearly a lifetime to get the mystery solved!

I did have surgery as a child in the 1940's but this only improved things and was not a cure, but I do not know why as my parents are both dead and I cannot ask them about it any more, sadly.

Pat

----- Original Message -----
From: Jennifer Babek
To: duanes@yahoogroups.com
Sent: Thursday, November 12, 2009 3:12 PM
Subject: Re: [duane's] teasing/ response to Carrie

First, let me warn you. This is my soapbox subject and I can go on and on about it. I’m a 35 year old with Duane’s and know exactly what your son is going through. I hid that teasing was happening until it became unbearable. I was teased throughout my childhood, especially in high school, about my eye. The teasing influenced by career choice and I’m now a therapist that works with youth to assist them and their families deal with such issues. Like your son, I also requested surgery in high school and had my 3 rd surgery my Senior Year (my surgeons didn’t know what they were doing). I had my 4 th surgery this year at UCLA with finally good results. First, I would recommend to anyone that they have surgery if any improvement can be gained. I’m a mom also and know how stressful the idea of surgery can be for a parent; however, your child will be dealing with this issue their entire life and they need to benefit from any improvements that can be made. It’s important for him to understand that Duane’s can’t be completely fixed and his eye may improve; however he will still signs of Duane’s (ex. after surgery my eye is centrally aligned but I still am not able to track to the left).

Dealing with teasing is such a tricky issue. Looking back I wish I would’ve allowed my mom to talk to the teachers to get it stopped. If you talk to the school don’t approach them with “my son is being teased”; approach them with “my son is being harassed”. Schools pay much more attention to the word “harassment”. If people were to say the same things to adults as they’re saying to him it would be considered harassment. Insist that the school do what they need to do to get it stopped. It’s very important to discuss a plan of action so that the school doesn’t further alienate him by handling it poorly. Many teachers do care and are very creative in the ways that they can get the harassment to stop. There are several moms of teens that post at times. Keep posting until you can find a parent of a teen that would be willing to arrange communication between your son and their child. Back then, I didn’t have the benefit of the internet and would’ve greatly benefited from talking to another teen with Duane’s. Encourage your son to stay involved an anything that he can. If he begins to isolate himself it will only make things much worse and as a parent it’s important that you watch for this. Help him understand that when he’s being harassed that “fight or flight” kicks in; which can cause feelings of wanting to get away from it all. He shouldn’t fight; but he shouldn’t isolate himself either. Isolation causes depression and promotes an unhealthy focus on his issue. Getting involved in many activities will help. As a parent, don’t ever minimize his feelings and don’t ever tell him to just ignore it (common advice but impossible to do). Provide support, listen, and make sure that he knows you’re in his corner and will do anything you can to help. Let him know that for me the teasing almost completely stopped when I began college. I still had some comments but they were few in far between. I hope this is somewhat helpful. Please let me know if there’s anything else I can do to help. Jennifer

From: Carrie Mitchel < ccmitchel73@yahoo.com >
To: duanes@yahoogroups.com
Sent: Wed, November 11, 2009 10:51:39 PM
Subject: Re: [duane's] hearing problems and Duane's

Somebody please help!!! My son who is 15 years old now is asking if he can have surgery on his eye. He was diagnosed before he was 2. He has duanes type I in his right eye and I didn't ever think that it bothered him until tonite when he asked me if he could get it fixed, apparently he is being teased at school about it. Is there any support groups out there for teens?? What can I do?????? Please help!!!!

Desperate

Mama
Carrie

From: Liane Herbst <liane@citylineinc. com>
To: duanes@yahoogroups. com
Sent: Wed, November 11, 2009 9:28:31 AM
Subject: Re: [duane's] hearing problems and Duane's

I have bilateral hearing loss in the lowest registers --- hasn't interfered with my life at all, but the docs think it is probably related to my bilateral Duane's.

-- Liane

----- Original Message -----
From: Villette1
To: duanes@yahoogroups. com
Sent: Tuesday, November 10, 2009 7:56 AM
Subject: [duane's] hearing problems and Duane's

Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now that I have been to several doctors, I know that it is related to the Duane's. So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do the best you can for your daughter and find competent physicians and hang in there.

Cheers,
Amy Crawford

Hello again Pat : I just wanted to know if you ever had balance problems like
running into the walls or if you walked late? My daughter has a vestibular
problem linked to he deaf ear (left) and I would like to know if others have
experienced it.
Thank you!

Clara





----- Mail Original -----
De: "Pat Smith" <patsmith21@...>
À: duanes@yahoogroups.com
Envoyé: Vendredi 13 Novembre 2009 10h52:09 GMT +01:00 Amsterdam / Berlin /
Berne / Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie







Hello everyone

Further to my post, I want to say how much I have appreciated this group since I
joined it and it makes me feel less of a freak because of my eye condition which
I did not understand anything about until so relatively recently. My parents
never discussed it with me and I do not recall getting satisfactory answers if I
did ask them about it.

I do hope all those who seek advice and treatment in this day and age will
receive successful remedial surgery. I know that my left eye does not match my
right eye when I look into a mirror and if I try to turn my eyes to the right,
my left Duane's eye goes into the right hand corner near my nose. Looking the
other way, I cannot get my left eye to go much to the left side of my face
beyond midline. I have never understood what a head turn is that is mentioned on
this site, as nothing I can do will align my eyes so that I can get binocular
vision.

All this sounds double dutch to those who do not have the problem, but I have
gained great understanding of my condition from reading the different posts on
this site.

I can say that I have had a fulfilling life with a responsible job and lots of
interests. At least I can hear out of one of my ears and am not totally deaf!
Family history research has revealed that both my Mother's siblings who lived
into adult hood were totally deaf in both ears so could not speak, being
described in those days as being "deaf and dumb". Further back in my Mother's
ancestry, on the maternal side, there were "deaf and dumb" siblings in one
family too.

Is Duane's hereditary?

With very best wishes to all.

Pat


----- Original Message -----
From: claradesaintalbin@...
To: duanes@yahoogroups.com
Sent: Friday, November 13, 2009 9:31 AM
Subject: Re: [duane's] teasing/ response to Carrie




Hello every one,

be very careful and confirm with a surgeon what exactly you expect from surgery
if you wish to take that decision.
If your son :
- has his eyes straight when he looks in front of him
- if the Duane's is only noticeable when he looks to the side
- and he dosen't have a head turn,
=> the surgery might not be the right solution because those the symptoms that
it can cure.
If you talk to the surgeon, insist that your son is expecting a good aesthetical
result, he will tell you if it can be done. You have to make sure your son
doesn't put all his hope in it if it can be disappointing...
Wish you the best!

Clara

----- Mail Original -----
De: "Pat Smith" < patsmith21@... >
À: duanes@yahoogroups.com
Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin / Berne /
Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie


This is probably why I was teased at school because my Duanes eye looks
different! I never realised it at the time but I did get some respite when my
Mother went to the school and discussed my plight with the headmaster and I was
moved to another class where all my friends were and given the chance to
progress with my studies and make something of my life, which otherwise would
have been very difficult, I suppose. I needed encouragement!

My Mother never told me I had Duanes, it was only when I was examined by an eye
consultant a few years ago that I found out why I do not have binocular vision
and have to look either out of one eye or the other, but not both together! Took
nearly a lifetime to get the mystery solved!

I did have surgery as a child in the 1940's but this only improved things and
was not a cure, but I do not know why as my parents are both dead and I cannot
ask them about it any more, sadly.

Pat

----- Original Message -----
From: Jennifer Babek
To: duanes@yahoogroups.com
Sent: Thursday, November 12, 2009 3:12 PM
Subject: Re: [duane's] teasing/ response to Carrie

First, let me warn you. This is my soapbox subject and I can go on and on about
it. I’m a 35 year old with Duane’s and know exactly what your son is going
through. I hid that teasing was happening until it became unbearable. I was
teased throughout my childhood, especially in high school, about my eye. The
teasing influenced by career choice and I’m now a therapist that works with
youth to assist them and their families deal with such issues. Like your son, I
also requested surgery in high school and had my 3 rd surgery my Senior Year (my
surgeons didn’t know what they were doing). I had my 4 th surgery this year at
UCLA with finally good results. First, I would recommend to anyone that they
have surgery if any improvement can be gained. I’m a mom also and know how
stressful the idea of surgery can be for a parent; however, your child will be
dealing with this issue their entire life and they need to benefit from any
improvements that can be made. It’s important for him to understand that
Duane’s can’t be completely fixed and his eye may improve; however he will
still signs of Duane’s (ex. after surgery my eye is centrally aligned but I
still am not able to track to the left).

Dealing with teasing is such a tricky issue. Looking back I wish I would’ve
allowed my mom to talk to the teachers to get it stopped. If you talk to the
school don’t approach them with “my son is being teased”; approach them
with “my son is being harassed”. Schools pay much more attention to the word
“harassment”. If people were to say the same things to adults as they’re
saying to him it would be considered harassment. Insist that the school do what
they need to do to get it stopped. It’s very important to discuss a plan of
action so that the school doesn’t further alienate him by handling it poorly.
Many teachers do care and are very creative in the ways that they can get the
harassment to stop. There are several moms of teens that post at times. Keep
posting until you can find a parent of a teen that would be willing to arrange
communication between your son and their child. Back then, I didn’t have the
benefit of the internet and would’ve greatly benefited from talking to another
teen with Duane’s. Encourage your son to stay involved an anything that he
can. If he begins to isolate himself it will only make things much worse and as
a parent it’s important that you watch for this. Help him understand that when
he’s being harassed that “fight or flight” kicks in; which can cause
feelings of wanting to get away from it all. He shouldn’t fight; but he
shouldn’t isolate himself either. Isolation causes depression and promotes an
unhealthy focus on his issue. Getting involved in many activities will help. As
a parent, don’t ever minimize his feelings and don’t ever tell him to just
ignore it (common advice but impossible to do). Provide support, listen, and
make sure that he knows you’re in his corner and will do anything you can to
help. Let him know that for me the teasing almost completely stopped when I
began college. I still had some comments but they were few in far between. I
hope this is somewhat helpful. Please let me know if there’s anything else I
can do to help. Jennifer

From: Carrie Mitchel < ccmitchel73@... >
To: duanes@yahoogroups.com
Sent: Wed, November 11, 2009 10:51:39 PM
Subject: Re: [duane's] hearing problems and Duane's

Somebody please help!!! My son who is 15 years old now is asking if he can have
surgery on his eye. He was diagnosed before he was 2. He has duanes type I in
his right eye and I didn't ever think that it bothered him until tonite when he
asked me if he could get it fixed, apparently he is being teased at school about
it. Is there any support groups out there for teens?? What can I do?????? Please
help!!!!

Desperate

Mama
Carrie

From: Liane Herbst <liane@citylineinc. com>
To: duanes@yahoogroups. com
Sent: Wed, November 11, 2009 9:28:31 AM
Subject: Re: [duane's] hearing problems and Duane's

I have bilateral hearing loss in the lowest registers --- hasn't interfered with
my life at all, but the docs think it is probably related to my bilateral
Duane's.

-- Liane

----- Original Message -----
From: Villette1
To: duanes@yahoogroups. com
Sent: Tuesday, November 10, 2009 7:56 AM
Subject: [duane's] hearing problems and Duane's

Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now
that I have been to several doctors, I know that it is related to the Duane's.
So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do
the best you can for your daughter and find competent physicians and hang in
there.

Cheers,
Amy Crawford

Hello Pat,

Duane's is definitely linked to genetics witch can make it transmittable from a
generation to another. However, it is not clear exactly how and to what extend
it is transmittable. For example, my daughter is apparently the only one in the
family to have such problems. But we may have had ancestors we don't know who
had Duane's...
About the head turn. My daughter tends to put her head on her right shoulder,
facing slightly upward so that she can look to her left side using her left eye
turned downward in the orbit (as it cannot turn to the left because of Duane's).
I don't know if I'm making it clear.
Have a nice day!

Clara



----- Mail Original -----
De: "Pat Smith" <patsmith21@...>
À: duanes@yahoogroups.com
Envoyé: Vendredi 13 Novembre 2009 10h52:09 GMT +01:00 Amsterdam / Berlin /
Berne / Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie







Hello everyone

Further to my post, I want to say how much I have appreciated this group since I
joined it and it makes me feel less of a freak because of my eye condition which
I did not understand anything about until so relatively recently. My parents
never discussed it with me and I do not recall getting satisfactory answers if I
did ask them about it.

I do hope all those who seek advice and treatment in this day and age will
receive successful remedial surgery. I know that my left eye does not match my
right eye when I look into a mirror and if I try to turn my eyes to the right,
my left Duane's eye goes into the right hand corner near my nose. Looking the
other way, I cannot get my left eye to go much to the left side of my face
beyond midline. I have never understood what a head turn is that is mentioned on
this site, as nothing I can do will align my eyes so that I can get binocular
vision.

All this sounds double dutch to those who do not have the problem, but I have
gained great understanding of my condition from reading the different posts on
this site.

I can say that I have had a fulfilling life with a responsible job and lots of
interests. At least I can hear out of one of my ears and am not totally deaf!
Family history research has revealed that both my Mother's siblings who lived
into adult hood were totally deaf in both ears so could not speak, being
described in those days as being "deaf and dumb". Further back in my Mother's
ancestry, on the maternal side, there were "deaf and dumb" siblings in one
family too.

Is Duane's hereditary?

With very best wishes to all.

Pat


----- Original Message -----
From: claradesaintalbin@...
To: duanes@yahoogroups.com
Sent: Friday, November 13, 2009 9:31 AM
Subject: Re: [duane's] teasing/ response to Carrie




Hello every one,

be very careful and confirm with a surgeon what exactly you expect from surgery
if you wish to take that decision.
If your son :
- has his eyes straight when he looks in front of him
- if the Duane's is only noticeable when he looks to the side
- and he dosen't have a head turn,
=> the surgery might not be the right solution because those the symptoms that
it can cure.
If you talk to the surgeon, insist that your son is expecting a good aesthetical
result, he will tell you if it can be done. You have to make sure your son
doesn't put all his hope in it if it can be disappointing...
Wish you the best!

Clara

----- Mail Original -----
De: "Pat Smith" < patsmith21@... >
À: duanes@yahoogroups.com
Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin / Berne /
Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie


This is probably why I was teased at school because my Duanes eye looks
different! I never realised it at the time but I did get some respite when my
Mother went to the school and discussed my plight with the headmaster and I was
moved to another class where all my friends were and given the chance to
progress with my studies and make something of my life, which otherwise would
have been very difficult, I suppose. I needed encouragement!

My Mother never told me I had Duanes, it was only when I was examined by an eye
consultant a few years ago that I found out why I do not have binocular vision
and have to look either out of one eye or the other, but not both together! Took
nearly a lifetime to get the mystery solved!

I did have surgery as a child in the 1940's but this only improved things and
was not a cure, but I do not know why as my parents are both dead and I cannot
ask them about it any more, sadly.

Pat

----- Original Message -----
From: Jennifer Babek
To: duanes@yahoogroups.com
Sent: Thursday, November 12, 2009 3:12 PM
Subject: Re: [duane's] teasing/ response to Carrie

First, let me warn you. This is my soapbox subject and I can go on and on about
it. I’m a 35 year old with Duane’s and know exactly what your son is going
through. I hid that teasing was happening until it became unbearable. I was
teased throughout my childhood, especially in high school, about my eye. The
teasing influenced by career choice and I’m now a therapist that works with
youth to assist them and their families deal with such issues. Like your son, I
also requested surgery in high school and had my 3 rd surgery my Senior Year (my
surgeons didn’t know what they were doing). I had my 4 th surgery this year at
UCLA with finally good results. First, I would recommend to anyone that they
have surgery if any improvement can be gained. I’m a mom also and know how
stressful the idea of surgery can be for a parent; however, your child will be
dealing with this issue their entire life and they need to benefit from any
improvements that can be made. It’s important for him to understand that
Duane’s can’t be completely fixed and his eye may improve; however he will
still signs of Duane’s (ex. after surgery my eye is centrally aligned but I
still am not able to track to the left).

Dealing with teasing is such a tricky issue. Looking back I wish I would’ve
allowed my mom to talk to the teachers to get it stopped. If you talk to the
school don’t approach them with “my son is being teased”; approach them
with “my son is being harassed”. Schools pay much more attention to the word
“harassment”. If people were to say the same things to adults as they’re
saying to him it would be considered harassment. Insist that the school do what
they need to do to get it stopped. It’s very important to discuss a plan of
action so that the school doesn’t further alienate him by handling it poorly.
Many teachers do care and are very creative in the ways that they can get the
harassment to stop. There are several moms of teens that post at times. Keep
posting until you can find a parent of a teen that would be willing to arrange
communication between your son and their child. Back then, I didn’t have the
benefit of the internet and would’ve greatly benefited from talking to another
teen with Duane’s. Encourage your son to stay involved an anything that he
can. If he begins to isolate himself it will only make things much worse and as
a parent it’s important that you watch for this. Help him understand that when
he’s being harassed that “fight or flight” kicks in; which can cause
feelings of wanting to get away from it all. He shouldn’t fight; but he
shouldn’t isolate himself either. Isolation causes depression and promotes an
unhealthy focus on his issue. Getting involved in many activities will help. As
a parent, don’t ever minimize his feelings and don’t ever tell him to just
ignore it (common advice but impossible to do). Provide support, listen, and
make sure that he knows you’re in his corner and will do anything you can to
help. Let him know that for me the teasing almost completely stopped when I
began college. I still had some comments but they were few in far between. I
hope this is somewhat helpful. Please let me know if there’s anything else I
can do to help. Jennifer

From: Carrie Mitchel < ccmitchel73@... >
To: duanes@yahoogroups.com
Sent: Wed, November 11, 2009 10:51:39 PM
Subject: Re: [duane's] hearing problems and Duane's

Somebody please help!!! My son who is 15 years old now is asking if he can have
surgery on his eye. He was diagnosed before he was 2. He has duanes type I in
his right eye and I didn't ever think that it bothered him until tonite when he
asked me if he could get it fixed, apparently he is being teased at school about
it. Is there any support groups out there for teens?? What can I do?????? Please
help!!!!

Desperate

Mama
Carrie

From: Liane Herbst <liane@citylineinc. com>
To: duanes@yahoogroups. com
Sent: Wed, November 11, 2009 9:28:31 AM
Subject: Re: [duane's] hearing problems and Duane's

I have bilateral hearing loss in the lowest registers --- hasn't interfered with
my life at all, but the docs think it is probably related to my bilateral
Duane's.

-- Liane

----- Original Message -----
From: Villette1
To: duanes@yahoogroups. com
Sent: Tuesday, November 10, 2009 7:56 AM
Subject: [duane's] hearing problems and Duane's

Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now
that I have been to several doctors, I know that it is related to the Duane's.
So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do
the best you can for your daughter and find competent physicians and hang in
there.

Cheers,
Amy Crawford

----- Original Message -----

From: claradesaintalbin@...

To: duanes@yahoogroups.com

Sent: Friday, November 13, 2009 9:31 AM

Subject: Re: [duane's] teasing/ response to Carrie

 

Hello every one,

be very careful and confirm with a surgeon what exactly you expect from surgery if you wish to take that decision.
If your son :
- has his eyes straight when he looks in front of him
- if the Duane's is only noticeable when he looks to the side
- and he dosen't have a head turn,
=> the surgery might not be the right solution because those the symptoms that it can cure.
If you talk to the surgeon, insist that your son is expecting a good aesthetical result, he will tell you if it can be done. You have to make sure your son doesn't put all his hope in it if it can be disappointing...
Wish you the best!

Clara

----- Mail Original -----
De: "Pat Smith" <patsmith21@ukonline.co.uk>
À: duanes@yahoogroups.com
Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin / Berne / Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie


This is probably why I was teased at school because my Duanes eye looks different! I never realised it at the time but I did get some respite when my Mother went to the school and discussed my plight with the headmaster and I was moved to another class where all my friends were and given the chance to progress with my studies and make something of my life, which otherwise would have been very difficult, I suppose. I needed encouragement!

My Mother never told me I had Duanes, it was only when I was examined by an eye consultant a few years ago that I found out why I do not have binocular vision and have to look either out of one eye or the other, but not both together! Took nearly a lifetime to get the mystery solved!

I did have surgery as a child in the 1940's but this only improved things and was not a cure, but I do not know why as my parents are both dead and I cannot ask them about it any more, sadly.

Pat

----- Original Message -----
From: Jennifer Babek
To: duanes@yahoogroups.com
Sent: Thursday, November 12, 2009 3:12 PM
Subject: Re: [duane's] teasing/ response to Carrie

First, let me warn you. This is my soapbox subject and I can go on and on about it. I’m a 35 year old with Duane’s and know exactly what your son is going through. I hid that teasing was happening until it became unbearable. I was teased throughout my childhood, especially in high school, about my eye. The teasing influenced by career choice and I’m now a therapist that works with youth to assist them and their families deal with such issues. Like your son, I also requested surgery in high school and had my 3 rd surgery my Senior Year (my surgeons didn’t know what they were doing). I had my 4 th surgery this year at UCLA with finally good results. First, I would recommend to anyone that they have surgery if any improvement can be gained. I’m a mom also and know how stressful the idea of surgery can be for a parent; however, your child will be dealing with this issue their entire life and they need to benefit from any improvements that can be made. It’s important for him to understand that Duane’s can’t be completely fixed and his eye may improve; however he will still signs of Duane’s (ex. after surgery my eye is centrally aligned but I still am not able to track to the left).

Dealing with teasing is such a tricky issue. Looking back I wish I would’ve allowed my mom to talk to the teachers to get it stopped. If you talk to the school don’t approach them with “my son is being teased”; approach them with “my son is being harassed”. Schools pay much more attention to the word “harassment”. If people were to say the same things to adults as they’re saying to him it would be considered harassment. Insist that the school do what they need to do to get it stopped. It’s very important to discuss a plan of action so that the school doesn’t further alienate him by handling it poorly. Many teachers do care and are very creative in the ways that they can get the harassment to stop. There are several moms of teens that post at times. Keep posting until you can find a parent of a teen that would be willing to arrange communication between your son and their child. Back then, I didn’t have the benefit of the internet and would’ve greatly benefited from talking to another teen with Duane’s. Encourage your son to stay involved an anything that he can. If he begins to isolate himself it will only make things much worse and as a parent it’s important that you watch for this. Help him understand that when he’s being harassed that “fight or flight” kicks in; which can cause feelings of wanting to get away from it all. He shouldn’t fight; but he shouldn’t isolate himself either. Isolation causes depression and promotes an unhealthy focus on his issue. Getting involved in many activities will help. As a parent, don’t ever minimize his feelings and don’t ever tell him to just ignore it (common advice but impossible to do). Provide support, listen, and make sure that he knows you’re in his corner and will do anything you can to help. Let him know that for me the teasing almost completely stopped when I began college. I still had some comments but they were few in far between. I hope this is somewhat helpful. Please let me know if there’s anything else I can do to help. Jennifer

From: Carrie Mitchel <ccmitchel73@yahoo.com>
To: duanes@yahoogroups.com
Sent: Wed, November 11, 2009 10:51:39 PM
Subject: Re: [duane's] hearing problems and Duane's

Somebody please help!!! My son who is 15 years old now is asking if he can have surgery on his eye. He was diagnosed before he was 2. He has duanes type I in his right eye and I didn't ever think that it bothered him until tonite when he asked me if he could get it fixed, apparently he is being teased at school about it. Is there any support groups out there for teens?? What can I do?????? Please help!!!!

Desperate

Mama
Carrie

From: Liane Herbst <liane@citylineinc. com>
To: duanes@yahoogroups. com
Sent: Wed, November 11, 2009 9:28:31 AM
Subject: Re: [duane's] hearing problems and Duane's

I have bilateral hearing loss in the lowest registers --- hasn't interfered with my life at all, but the docs think it is probably related to my bilateral Duane's.

-- Liane

----- Original Message -----
From: Villette1
To: duanes@yahoogroups. com
Sent: Tuesday, November 10, 2009 7:56 AM
Subject: [duane's] hearing problems and Duane's

Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now that I have been to several doctors, I know that it is related to the Duane's. So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do the best you can for your daughter and find competent physicians and hang in there.

Cheers,
Amy Crawford

Hello every one,

be very careful and confirm with a surgeon what exactly you expect from surgery
if you wish to take that decision.
If your son :
- has his eyes straight when he looks in front of him
- if the Duane's is only noticeable when he looks to the side
- and he dosen't have a head turn,
=> the surgery might not be the right solution because those the symptoms that
it can cure.
If you talk to the surgeon, insist that your son is expecting a good aesthetical
result, he will tell you if it can be done. You have to make sure your son
doesn't put all his hope in it if it can be disappointing...
Wish you the best!

Clara





----- Mail Original -----
De: "Pat Smith" <patsmith21@...>
À: duanes@yahoogroups.com
Envoyé: Jeudi 12 Novembre 2009 23h22:13 GMT +01:00 Amsterdam / Berlin / Berne /
Rome / Stockholm / Vienne
Objet: Re: [duane's] teasing/ response to Carrie







This is probably why I was teased at school because my Duanes eye looks
different! I never realised it at the time but I did get some respite when my
Mother went to the school and discussed my plight with the headmaster and I was
moved to another class where all my friends were and given the chance to
progress with my studies and make something of my life, which otherwise would
have been very difficult, I suppose. I needed encouragement!

My Mother never told me I had Duanes, it was only when I was examined by an eye
consultant a few years ago that I found out why I do not have binocular vision
and have to look either out of one eye or the other, but not both together! Took
nearly a lifetime to get the mystery solved!

I did have surgery as a child in the 1940's but this only improved things and
was not a cure, but I do not know why as my parents are both dead and I cannot
ask them about it any more, sadly.

Pat



----- Original Message -----
From: Jennifer Babek
To: duanes@yahoogroups.com
Sent: Thursday, November 12, 2009 3:12 PM
Subject: Re: [duane's] teasing/ response to Carrie








First, let me warn you. This is my soapbox subject and I can go on and on about
it. I’m a 35 year old with Duane’s and know exactly what your son is going
through. I hid that teasing was happening until it became unbearable. I was
teased throughout my childhood, especially in high school, about my eye. The
teasing influenced by career choice and I’m now a therapist that works with
youth to assist them and their families deal with such issues. Like your son, I
also requested surgery in high school and had my 3 rd surgery my Senior Year (my
surgeons didn’t know what they were doing). I had my 4 th surgery this year at
UCLA with finally good results. First, I would recommend to anyone that they
have surgery if any improvement can be gained. I’m a mom also and know how
stressful the idea of surgery can be for a parent; however, your child will be
dealing with this issue their entire life and they need to benefit from any
improvements that can be made. It’s important for him to understand that
Duane’s can’t be completely fixed and his eye may improve; however he will
still signs of Duane’s (ex. after surgery my eye is centrally aligned but I
still am not able to track to the left).

Dealing with teasing is such a tricky issue. Looking back I wish I would’ve
allowed my mom to talk to the teachers to get it stopped. If you talk to the
school don’t approach them with “my son is being teased”; approach them
with “my son is being harassed”. Schools pay much more attention to the word
“harassment”. If people were to say the same things to adults as they’re
saying to him it would be considered harassment. Insist that the school do what
they need to do to get it stopped. It’s very important to discuss a plan of
action so that the school doesn’t further alienate him by handling it poorly.
Many teachers do care and are very creative in the ways that they can get the
harassment to stop. There are several moms of teens that post at times. Keep
posting until you can find a parent of a teen that would be willing to arrange
communication between your son and their child. Back then, I didn’t have the
benefit of the internet and would’ve greatly benefited from talking to another
teen with Duane’s. Encourage your son to stay involved an anything that he
can. If he begins to isolate himself it will only make things much worse and as
a parent it’s important that you watch for this. Help him understand that when
he’s being harassed that “fight or flight” kicks in; which can cause
feelings of wanting to get away from it all. He shouldn’t fight; but he
shouldn’t isolate himself either. Isolation causes depression and promotes an
unhealthy focus on his issue. Getting involved in many activities will help. As
a parent, don’t ever minimize his feelings and don’t ever tell him to just
ignore it (common advice but impossible to do). Provide support, listen, and
make sure that he knows you’re in his corner and will do anything you can to
help. Let him know that for me the teasing almost completely stopped when I
began college. I still had some comments but they were few in far between. I
hope this is somewhat helpful. Please let me know if there’s anything else I
can do to help. Jennifer



From: Carrie Mitchel <ccmitchel73@...>
To: duanes@yahoogroups.com
Sent: Wed, November 11, 2009 10:51:39 PM
Subject: Re: [duane's] hearing problems and Duane's







Somebody please help!!! My son who is 15 years old now is asking if he can have
surgery on his eye. He was diagnosed before he was 2. He has duanes type I in
his right eye and I didn't ever think that it bothered him until tonite when he
asked me if he could get it fixed, apparently he is being teased at school about
it. Is there any support groups out there for teens?? What can I do?????? Please
help!!!!

Desperate

Mama
Carrie





From: Liane Herbst <liane@citylineinc. com>
To: duanes@yahoogroups. com
Sent: Wed, November 11, 2009 9:28:31 AM
Subject: Re: [duane's] hearing problems and Duane's





I have bilateral hearing loss in the lowest registers --- hasn't interfered with
my life at all, but the docs think it is probably related to my bilateral
Duane's.

-- Liane


----- Original Message -----
From: Villette1
To: duanes@yahoogroups. com
Sent: Tuesday, November 10, 2009 7:56 AM
Subject: [duane's] hearing problems and Duane's




Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now
that I have been to several doctors, I know that it is related to the Duane's.
So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do
the best you can for your daughter and find competent physicians and hang in
there.

Cheers,
Amy Crawford

----- Original Message -----

From: Jennifer Babek

To: duanes@yahoogroups.com

Sent: Thursday, November 12, 2009 3:12 PM

Subject: Re: [duane's] teasing/ response to Carrie

 

First, let me warn you. This is my soapbox subject and I can go on and on about it. I’m a 35 year old with Duane’s and know exactly what your son is going through. I hid that teasing was happening until it became unbearable. I was teased throughout my childhood, especially in high school, about my eye.  The teasing influenced by career choice and I’m now a therapist that works with youth to assist them and their families deal with such issues.   Like your son, I also requested surgery in high school and had my 3^rd surgery my Senior Year (my surgeons didn’t know what they were doing). I had my 4^th surgery this year at UCLA with finally good results. First, I would recommend to anyone that they have surgery if any improvement can be gained. I’m a mom also and know how stressful the idea of surgery can be for a parent; however, your child will be dealing with this issue their entire life and they need to benefit from any improvements that can be made. It’s important for him to understand that Duane’s can’t be completely fixed and his eye may improve; however he will still signs of Duane’s (ex. after surgery my eye is centrally aligned but I still am not able to track to the left).

Dealing with teasing is such a tricky issue. Looking back I wish I would’ve allowed my mom to talk to the teachers to get it stopped.  If you talk to the school don’t approach them with “my son is being teased”; approach them with “my son is being harassed”. Schools pay much more attention to the word “harassment”. If people were to say the same things to adults as they’re saying to him it would be considered harassment.  Insist that the school do what they need to do to get it stopped. It’s very important to discuss a plan of action so that the school doesn’t further alienate him by handling it poorly.  Many teachers do care and are very creative in the ways that they can get the harassment to stop.  There are several moms of teens that post at times. Keep posting until you can find a parent of a teen that would be willing to arrange communication between your son and their child. Back then, I didn’t have the benefit of the internet and would’ve greatly benefited from talking to another teen with Duane’s. Encourage your son to stay involved an anything that he can. If he begins to isolate himself it will only make things much worse and as a parent it’s important that you watch for this. Help him understand that when he’s being harassed that “fight or flight” kicks in; which can cause feelings of wanting to get away from it all. He shouldn’t fight; but he shouldn’t isolate himself either.  Isolation causes depression and promotes an unhealthy focus on his issue. Getting involved in many activities will help. As a parent, don’t ever minimize his feelings and don’t ever tell him to just ignore it (common advice but impossible to do). Provide support, listen, and make sure that he knows you’re in his corner and will do anything you can to help. Let him know that for me the teasing almost completely stopped when I began college. I still had some comments but they were few in far between.  I hope this is somewhat helpful. Please let me know if there’s anything else I can do to help. Jennifer

---

From: Carrie Mitchel <ccmitchel73@yahoo.com>
To: duanes@yahoogroups.com
Sent: Wed, November 11, 2009 10:51:39 PM
Subject: Re: [duane's] hearing problems and Duane's

 

Somebody please help!!! My son who is 15 years old now is asking if he can have surgery on his eye. He was diagnosed before he was 2. He has duanes type I in his right eye and I didn't ever think that it bothered him until tonite when he asked me if he could get it fixed, apparently he is being teased at school about it. Is there any support groups out there for teens?? What can I do?????? Please help!!!!

 

Desperate 

 

Mama
 

 Carrie

---

From: Liane Herbst <liane@citylineinc. com>
To: duanes@yahoogroups. com
Sent: Wed, November 11, 2009 9:28:31 AM
Subject: Re: [duane's] hearing problems and Duane's

 

I have bilateral hearing loss in the lowest registers --- hasn't interfered with my life at all, but the docs think it is probably related to my bilateral Duane's.

 

-- Liane

----- Original Message -----

From: Villette1

To: duanes@yahoogroups. com

Sent: Tuesday, November 10, 2009 7:56 AM

Subject: [duane's] hearing problems and Duane's

 

Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now that I have been to several doctors, I know that it is related to the Duane's. So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do the best you can for your daughter and find competent physicians and hang in there.

Cheers,
Amy Crawford

I'm sorry to hear about your son and the teasing. I am a 17 year old female with
Duane's Syndrome. Fortunately, I have not been teased very much, but I was
really hurt the few times that it did happen. I have had four eye surgeries all
before the age of ten to help align my eyes. Unfortunately I have a really bad
case of Duane's Syndrome so the most the doctors could do for me is to somewhat
align my eyes. My mother once asked me if I wished that they had not made me do
the eye surgeries, and I told her that even though I did not understand why they
were necessary at the time, I am very glad that we went ahead with them. I think
the surgeries saved me from a lot of teasing. I think that if surgery is a
possible option for your son that he would be very grateful if you did it. I
hope he works out the teasing situation.

Taylor

--- In duanes@yahoogroups.com, Carrie Mitchel <ccmitchel73@...> wrote:
>
> Jennifer,
> Thank you so much for your words of encouragement. I have always made sure
that my son is
> very involved in anything he shows an interest in. He excelled in football and
is now involved
> in a powerlifting class at school. I had a talk with him last night and
suggested that he have a
> talk with his closest friends and tell them that the teasing is hurtful. He
has always played it off
> as a joke until now(or at least thats what I thought). He never developed a
head turn so when
> he looks to the right his "good" eye crosses. That is where all of the
teasing comes from. If it weren't
> for that you couldn't even tell that he has it.  When he was
diagnosed before he was a year old the
> doctors told me that there was nothing that could be done. We do not have
insurance so I'm wondering
> how much the surgery will cost and if it would be worth it in the long run.
We would do anything for
> him to make his life better, I just hesitate to put him through surgery when
there is a chance that it
> won't make any difference or worst case make it worse. I will continue to post
and hopefully
> find someone with a teen that he could talk to. Thank you again and God Bless!
> Carrie
>   Carrie
>
>
>
>
> ________________________________
> From: Jennifer Babek <jbabek@...>
> To: duanes@yahoogroups.com
> Sent: Thu, November 12, 2009 9:12:17 AM
> Subject: Re: [duane's] teasing/ response to Carrie
>
>  
> First, let me warn you. This is my soapbox subject and I can go on and on
about it. I’m a 35 year old with Duane’s and know exactly what your son is
going through. I hid that teasing was happening until it became unbearable. I
was teased throughout my childhood, especially in high school, about my eye. 
The teasing influenced by career choice and I’m now a therapist that works
with youth to assist them and their families deal with such issues.   Like
your son, I also requested surgery in high school and had my 3rd surgery my
Senior Year (my surgeons didn’t know what they were doing). I had my 4th
surgery this year at UCLA with finally good results. First, I would recommend to
anyone that they have surgery if any improvement can be gained. I’m a mom also
and know how stressful the idea of surgery can be for a parent; however, your
child will be dealing with this issue their entire life and they need to benefit
from any improvements that can
>  be made. It’s important for him to understand that Duane’s can’t be
completely fixed and his eye may improve; however he will still signs of
Duane’s (ex. after surgery my eye is centrally aligned but I still am not able
to track to the left).
> Dealing with teasing is such a tricky issue. Looking back I wish I would’ve
allowed my mom to talk to the teachers to get it stopped.  If you talk to the
school don’t approach them with “my son is being teased”; approach them
with “my son is being harassed”. Schools pay much more attention to the word
“harassment”. If people were to say the same things to adults as they’re
saying to him it would be considered harassment.  Insist that the school do
what they need to do to get it stopped. It’s very important to discuss a plan
of action so that the school doesn’t further alienate him by handling it
poorly.  Many teachers do care and are very creative in the ways that they can
get the harassment to stop.  There are several moms of teens that post at
times. Keep posting until you can find a parent of a teen that would be willing
to arrange communication between your son and their child. Back then, I didn’t
have the benefit of the
>  internet and would’ve greatly benefited from talking to another teen with
Duane’s. Encourage your son to stay involved an anything that he can. If he
begins to isolate himself it will only make things much worse and as a parent
it’s important that you watch for this. Help him understand that when he’s
being harassed that “fight or flight” kicks in; which can cause feelings of
wanting to get away from it all. He shouldn’t fight; but he shouldn’t
isolate himself either.  Isolation causes depression and promotes an unhealthy
focus on his issue. Getting involved in many activities will help. As a parent,
don’t ever minimize his feelings and don’t ever tell him to just ignore it
(common advice but impossible to do). Provide support, listen, and make sure
that he knows you’re in his corner and will do anything you can to help. Let
him know that for me the teasing almost completely stopped when I began college.
I still had some comments
>  but they were few in far between.  I hope this is somewhat helpful. Please
let me know if there’s anything else I can do to help. Jennifer
>
>
>
> ________________________________
> From: Carrie Mitchel <ccmitchel73@ yahoo.com>
> To: duanes@yahoogroups. com
> Sent: Wed, November 11, 2009 10:51:39 PM
> Subject: Re: [duane's] hearing problems and Duane's
>
>  
> Somebody please help!!! My son who is 15 years old now is asking if he can
have surgery on his eye. He was diagnosed before he was 2. He has duanes type I
in his right eye and I didn't ever think that it bothered him until tonite when
he asked me if he could get it fixed, apparently he is being teased at school
about it. Is there any support groups out there for teens?? What can I do??????
Please help!!!!
>
> Desperate 
>
> Mama
>   Carrie
>
>
>
>
> ________________________________
> From: Liane Herbst <liane@citylineinc. com>
> To: duanes@yahoogroups. com
> Sent: Wed, November 11, 2009 9:28:31 AM
> Subject: Re: [duane's] hearing problems and Duane's
>
>  
> I have bilateral hearing loss in the lowest registers --- hasn't interfered
with my life at all, but the docs think it is probably related to my bilateral
Duane's.
>  
> -- Liane
> ----- Original Message -----
> >From: Villette1
> >To: duanes@yahoogroups. com
> >Sent: Tuesday, November 10, 2009 7:56 AM
> >Subject: [duane's] hearing problems and Duane's
> >
> > 
> >Dear Markia,
> >
> >I am 31 now, Type II Duane's. I have had a hearing problem since birth and
now that I have been to several doctors, I know that it is related to the
Duane's. So, yes, some Duane's patients also have hearing loss. Don't be
alarmed. Just do the best you can for your daughter and find competent
physicians and hang in there.
> >
> >Cheers,
> >Amy Crawford
> >
> >
>

----- Original Message -----

From: Villette1

To: duanes@yahoogroups.com

Sent: Tuesday, November 10, 2009 7:56 AM

Subject: [duane's] hearing problems and Duane's

 

Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now that I have been to several doctors, I know that it is related to the Duane's. So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do the best you can for your daughter and find competent physicians and hang in there.

Cheers,
Amy Crawford

 

Yes I have complete absence of hearing in the left ear, on the same side as my Duane's 2 eye but I have lived with it for over 60 years since I was born and it did not stop me from fulfilling my potential in life.

 

Patricia Smith

----- Original Message -----

From: Villette1

To: duanes@yahoogroups.com

Sent: Tuesday, November 10, 2009 3:56 PM

Subject: [duane's] hearing problems and Duane's

 

Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now that I have been to several doctors, I know that it is related to the Duane's. So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do the best you can for your daughter and find competent physicians and hang in there.

Cheers,
Amy Crawford

----- Original Message -----

From: Villette1

To: duanes@yahoogroups.com

Sent: Tuesday, November 10, 2009 3:56 PM

Subject: [duane's] hearing problems and Duane's

 

Dear Markia,

I am 31 now, Type II Duane's. I have had a hearing problem since birth and now that I have been to several doctors, I know that it is related to the Duane's. So, yes, some Duane's patients also have hearing loss. Don't be alarmed. Just do the best you can for your daughter and find competent physicians and hang in there.

Cheers,
Amy Crawford