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

From: rebeccadagenais@...

To: duanes@yahoogroups.com

Sent: Monday, December 07, 2009 8:01 AM

Subject: Re: [duane's] To cut or not to cut

 

My daughter's P.O. said he wanted to look into whether or not there have been any surgeries done on bilateral Duane's cases. His concern is the vertical deviation you're referring to and that because both eyes would be operated on, you could be affecting the vertical movement in both eyes.

Liane, I am relieved to hear that your son with bil Duane's has done so well. My daughter is almost 11 months and I want to know about what the best timing is in of all of this. I don't want to wait too long if better results can be achieved at an earlier age.

Is there anyone else out there (you or your child) who has bil Duane's and has had VRT? If so at what age and with whom? Is Dr. R the only one out there that will do the bilateral cases? I feel the more convincing a case I can make for this, the more the P.O. will be on board.

Thanks,
Becky

--- In duanes@yahoogroups.com, "Liane Herbst" <liane@...> wrote:
>
> I would also add that my son had VRT at age 1 in each eye (bilateral Duane's) and did end up with a slight vertical deviation in some gazes. Dr. R. did not think it required follow-up surgery. My son is now 8 and we just had him evaluated by a vision therapist to see if vision therapy would be useful. After an extensive examination, the vision therapist told us that he has great fusion, that the vertical deviation is not an issue, and that he is not a candidate for VT because his eyes work so well together.
>
> -- Liane
>
>
> ----- Original Message -----
> From: Candice Forbes
> To: duanes@yahoogroups.com
> Sent: Saturday, December 05, 2009 9:39 AM
> Subject: Re: [duane's] To cut or not to cut
>
>
>
> Unfortunately you have hit on the dilemma that many of us have been through, including myself. There is a vast difference in opinion for surgery in small children. Here is what I understand.
>
>
>
> The ones against the surgery are afraid of a vertical deviation( the eyes not lining up in the up and down position). While our children can deal with a horizontal change, the vertical change is quite different. If it is not dealt with appropriately (meaning another surgery within 24 hours) then the eye can be shut down by the brain forever. Five to six seems to be the break point on where this can happen. Younger than 5-6 and you are in the "danger" zone. Over 5-6 and the risk lowers significantly. It has to do when the brain "sets" the eyes.
>
>
> The other doctors (including Dr Rosenbaum) believe that better surgical results are achieved before the 5-6 years of age. They take advantage of the same lack of "set" eyes so that the brain can "lock" in a more corrected position. These doctors will also tell you that if a vertical deviation occurs they will take the child back into surgery the next day. And that is not without risk.
>
>
> In all honesty this caused many months of heart ache for me. However, Dr Rosenbaum did 4-5 surgeries a month on Duane's kids and the other doctor did 3-4 a year. I went with the better track record and the hope of more knowledge. The gain has been incredible for my 6 year old son. He has survived 1 1/2 years of school without one teasing incident. No one knows he has an issue except the teacher that I tell every year.
>
>
> All this to say, Duane's is rare. If a surgeon or doctor is not very knowledgeable about Duane's, I would hesitate to use them. Many of us have chosen Dr Rosenbaum at UCLA for just this reason.
>
>
> I can only imagine that this information will only add to your anxiety. Just know that many of us have been there before! And someone walked us through the process too, so ask more questions when they come.
>
>
> God Bless,
>
>
> Candi
>
> On Dec 5, 2009, at 10:55 AM, Ashley wrote:
>
>
>
> My 22-month-old son has Duanes type 1 left eye. He was diagnosed at 9 months and we have been seeing an pediatric ophthalmologist since then. At our last appointment she noticed that his left eye has become a little more pulled in than she would like. Although he is just a little far sighted, she wants him to wear glasses to see if that would help and then evaluated him for surgery which we have scheduled in March.
> Because she didn't carry glasses in her office, and because of insurance, we went to an optometrist office that had glasses for babies. He was recommended by my husband's friend who has Duanes. He has been seeing this doctor since he was very young. When we were in the office trying on glasses, the doctor happened to walk by and heard my son screaming, he wanted to know why we were getting glasses with such a light prescription for such a young child. I explained to him about the plan for surgery and he was very against it. Then he sat down and talked to me about how against surgery he is for a child this young and that he recommends eye therapy instead to teach him how to use his eyes correctly. I scheduled an appointment with him for an exam to see what he has to say.
> So now I am really confused and not sure what to do. My son has a lot of developmental delays and sensory issues and I really want to do what ever is going to help him the most. Thank you in advanced for your help with this issue.
>

I also believe that the younger the child is during surgery, the better results
you will get, because the eye is easier to train. As long as you get a Dr. that
has extensive knowledge of Duane's and the surgery, I think you should be fine.

--- In duanes@yahoogroups.com, "rebeccadagenais@..." <rebeccadagenais@...>
wrote:
>
> My daughter's P.O. said he wanted to look into whether or not there have been
any surgeries done on bilateral Duane's cases.  His concern is the vertical
deviation you're referring to and that because both eyes would be operated on,
you could be affecting the vertical movement in both eyes.
>
> Liane, I am relieved to hear that your son with bil Duane's has done so well. 
My daughter is almost 11 months and I want to know about what the best timing is
in of all of this.  I don't want to wait too long if better results can be
achieved at an earlier age.
>
> Is there anyone else out there (you or your child) who has bil Duane's and has
had VRT?  If so at what age and with whom?  Is Dr. R the only one out there that
will do the bilateral cases?  I feel the more convincing a case I can make for
this, the more the P.O. will be on board.
>
> Thanks,
> Becky
>
> --- In duanes@yahoogroups.com, "Liane Herbst" <liane@> wrote:
> >
> > I would also add that my son had VRT at age 1 in each eye (bilateral
Duane's) and did end up with a slight vertical deviation in some gazes. Dr. R.
did not think it required follow-up surgery.  My son is now 8 and we just had
him evaluated by a vision therapist to see if vision therapy would be useful. 
After an extensive examination, the vision therapist told us that he has great
fusion, that the vertical deviation is not an issue, and that he is not a
candidate for VT because his eyes work so well together.
> >
> > -- Liane
> >
> >
> >   ----- Original Message -----
> >   From: Candice Forbes
> >   To: duanes@yahoogroups.com
> >   Sent: Saturday, December 05, 2009 9:39 AM
> >   Subject: Re: [duane's] To cut or not to cut
> >
> >
> >
> >   Unfortunately you have hit on the dilemma that many of us have been
through, including myself.  There is a vast difference in opinion for surgery in
small children.  Here is what I understand.
> >
> >
> >
> >   The ones against the surgery are afraid of a vertical deviation( the eyes
not lining up in the up and down position).  While our children can deal with a
horizontal change, the vertical change is quite different.  If it is not dealt
with appropriately (meaning another surgery within 24 hours) then the eye can be
shut down by the brain forever.  Five to six seems to be the break point on
where this can happen.  Younger than 5-6 and you are in the "danger" zone.  Over
5-6 and the risk lowers significantly.  It has to do when the brain "sets" the
eyes.
> >
> >
> >   The other doctors (including Dr Rosenbaum) believe that better surgical
results are achieved before the 5-6 years of age.  They take advantage of the
same lack of "set" eyes so that the brain can "lock" in a more corrected
position.  These doctors will also tell you that if a vertical deviation occurs
they will take the child back into surgery the next day.  And that is not
without risk.
> >
> >
> >   In all honesty this caused many months of heart ache for me.  However, Dr
Rosenbaum did 4-5 surgeries a month on Duane's kids and the other doctor did 3-4
a year.  I went with the better track record and the hope of more knowledge. 
The gain has been incredible for my 6 year old son.  He has survived 1 1/2 years
of school without one teasing incident.  No one knows he has an issue except the
teacher that I tell every year.
> >
> >
> >   All this to say, Duane's is rare.  If a surgeon or doctor is not very
knowledgeable about Duane's, I would hesitate to use them.  Many of us have
chosen Dr Rosenbaum at UCLA for just this reason.
> >
> >
> >   I can only imagine that this information will only add to your anxiety. 
Just know that many of us have been there before!  And someone walked us through
the process too, so ask more questions when they come.
> >
> >
> >   God Bless,
> >
> >
> >   Candi
> >
> >   On Dec 5, 2009, at 10:55 AM, Ashley wrote:
> >
> >
> >
> >     My 22-month-old son has Duanes type 1 left eye. He was diagnosed at 9
months and we have been seeing an pediatric ophthalmologist since then. At our
last appointment she noticed that his left eye has become a little more pulled
in than she would like. Although he is just a little far sighted, she wants him
to wear glasses to see if that would help and then evaluated him for surgery
which we have scheduled in March.
> >     Because she didn't carry glasses in her office, and because of
insurance, we went to an optometrist office that had glasses for babies. He was
recommended by my husband's friend who has Duanes. He has been seeing this
doctor since he was very young. When we were in the office trying on glasses,
the doctor happened to walk by and heard my son screaming, he wanted to know why
we were getting glasses with such a light prescription for such a young child. I
explained to him about the plan for surgery and he was very against it. Then he
sat down and talked to me about how against surgery he is for a child this young
and that he recommends eye therapy instead to teach him how to use his eyes
correctly. I scheduled an appointment with him for an exam to see what he has to
say.
> >     So now I am really confused and not sure what to do. My son has a lot of
developmental delays and sensory issues and I really want to do what ever is
going to help him the most. Thank you in advanced for your help with this issue.
> >
>

Hi all,

It's been a very hectic few for me. To give our new readers a brief history: I
am a 26 year old female with Duane's in my left eye. I had a very slight head
turn as a child, but that progressively got worse, until my head turn was about
35 degrees. I chose to go to Dr. R. in June to have the VRT surgery. I got
vertical deviation, and this didn't show till about a week later, when I was
already back home. I had to go back, and Dr. R. said my case of deviation was
different from the others. Most vertical deviations happen where the eye  that
was operated on is sitting lower than the other, but mine was higher, and it
presented late. He corrected this as much as he could on a second trip to LA.
The results then were not promising to say the least. I did not have the
improvement that others see with this surgery and I still didn't have the full
functionality that I had before the surgeries. In the midst of trying to get all
this fixed from Denver, I found a Dr that worked under Dr. R and in fact wrote a
paper in vertical deviation in Duane's cases. Her name is Dr. Adrian Ruth. I
opted to have her perform the follow up MMR surgery. She decided that since my
left medius muscle was so tight, that she wanted to operate on both eyes. I got
this done about a month ago, and Dr. Ruth said that my muscle was the tightest
that she had ever seen.

  I have to say that I am mostly happy with the results. I did not gain any
lateral movement, but at my age and with the tightness of my muscles, this was
unlikely. What really happened was that my center of gaze shifted from a head
turn of 35 degrees to a head turn of less than five. This is pretty awesome all
in itself, because I am now holding my head straight and feel more confident
talking to people who stand on my left side as well as on my right. Though it
may seem like a small difference, it has helped me tremendously.  I do have some
double vision when I look to my right that I didn't have before all the
surgeries, and this is because of the VRT surgery and not the others.

I do want to say Dr. R is an excellent surgeon, but I think that he may think so
highly of this particular surgery that he doesn't always think of the side
effects. Dr. Ruth has mentioned that this surgery is much harder to perform in
adults with positive results and that for most cases MMR will be fine. However,
it was mentioned that VRT was good for me, because of how tight my muscle was.
The VRT should help keep my muscle in it's new position for longer.

I know a few of you sent me a list of questions when I first had the surgery
that I never really answered. I apologize for that, as I had a couple of other
life changing things happen in the middle of all this. However, if you want to
email me any questions, I will be sure to answer them this time.

My daughter's P.O. said he wanted to look into whether or not there have been
any surgeries done on bilateral Duane's cases.  His concern is the vertical
deviation you're referring to and that because both eyes would be operated on,
you could be affecting the vertical movement in both eyes.

Liane, I am relieved to hear that your son with bil Duane's has done so well. 
My daughter is almost 11 months and I want to know about what the best timing is
in of all of this.  I don't want to wait too long if better results can be
achieved at an earlier age.

Is there anyone else out there (you or your child) who has bil Duane's and has
had VRT?  If so at what age and with whom?  Is Dr. R the only one out there that
will do the bilateral cases?  I feel the more convincing a case I can make for
this, the more the P.O. will be on board.

Thanks,
Becky

--- In duanes@yahoogroups.com, "Liane Herbst" <liane@...> wrote:
>
> I would also add that my son had VRT at age 1 in each eye (bilateral Duane's)
and did end up with a slight vertical deviation in some gazes. Dr. R. did not
think it required follow-up surgery.  My son is now 8 and we just had him
evaluated by a vision therapist to see if vision therapy would be useful.  After
an extensive examination, the vision therapist told us that he has great fusion,
that the vertical deviation is not an issue, and that he is not a candidate for
VT because his eyes work so well together.
>
> -- Liane
>
>
>   ----- Original Message -----
>   From: Candice Forbes
>   To: duanes@yahoogroups.com
>   Sent: Saturday, December 05, 2009 9:39 AM
>   Subject: Re: [duane's] To cut or not to cut
>
>
>
>   Unfortunately you have hit on the dilemma that many of us have been through,
including myself.  There is a vast difference in opinion for surgery in small
children.  Here is what I understand.
>
>
>
>   The ones against the surgery are afraid of a vertical deviation( the eyes
not lining up in the up and down position).  While our children can deal with a
horizontal change, the vertical change is quite different.  If it is not dealt
with appropriately (meaning another surgery within 24 hours) then the eye can be
shut down by the brain forever.  Five to six seems to be the break point on
where this can happen.  Younger than 5-6 and you are in the "danger" zone.  Over
5-6 and the risk lowers significantly.  It has to do when the brain "sets" the
eyes.
>
>
>   The other doctors (including Dr Rosenbaum) believe that better surgical
results are achieved before the 5-6 years of age.  They take advantage of the
same lack of "set" eyes so that the brain can "lock" in a more corrected
position.  These doctors will also tell you that if a vertical deviation occurs
they will take the child back into surgery the next day.  And that is not
without risk.
>
>
>   In all honesty this caused many months of heart ache for me.  However, Dr
Rosenbaum did 4-5 surgeries a month on Duane's kids and the other doctor did 3-4
a year.  I went with the better track record and the hope of more knowledge. 
The gain has been incredible for my 6 year old son.  He has survived 1 1/2 years
of school without one teasing incident.  No one knows he has an issue except the
teacher that I tell every year.
>
>
>   All this to say, Duane's is rare.  If a surgeon or doctor is not very
knowledgeable about Duane's, I would hesitate to use them.  Many of us have
chosen Dr Rosenbaum at UCLA for just this reason.
>
>
>   I can only imagine that this information will only add to your anxiety. 
Just know that many of us have been there before!  And someone walked us through
the process too, so ask more questions when they come.
>
>
>   God Bless,
>
>
>   Candi
>
>   On Dec 5, 2009, at 10:55 AM, Ashley wrote:
>
>
>
>     My 22-month-old son has Duanes type 1 left eye. He was diagnosed at 9
months and we have been seeing an pediatric ophthalmologist since then. At our
last appointment she noticed that his left eye has become a little more pulled
in than she would like. Although he is just a little far sighted, she wants him
to wear glasses to see if that would help and then evaluated him for surgery
which we have scheduled in March.
>     Because she didn't carry glasses in her office, and because of insurance,
we went to an optometrist office that had glasses for babies. He was recommended
by my husband's friend who has Duanes. He has been seeing this doctor since he
was very young. When we were in the office trying on glasses, the doctor
happened to walk by and heard my son screaming, he wanted to know why we were
getting glasses with such a light prescription for such a young child. I
explained to him about the plan for surgery and he was very against it. Then he
sat down and talked to me about how against surgery he is for a child this young
and that he recommends eye therapy instead to teach him how to use his eyes
correctly. I scheduled an appointment with him for an exam to see what he has to
say.
>     So now I am really confused and not sure what to do. My son has a lot of
developmental delays and sensory issues and I really want to do what ever is
going to help him the most. Thank you in advanced for your help with this issue.
>

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

From: hmom76

To: duanes@yahoogroups.com

Sent: Friday, December 04, 2009 10:03 PM

Subject: [duane's] duanes and hair

 

Hello everyone,
please i would like to ask you 2 questions,is there any relation between duanes and the thin head hair?
as my daughter is type 2 duanes ,when she was young,the doctor say she is type 1 and now he told me that she is type 2.
she is almost 3and half years old and hse has thin hait ,i mean that her hair is growing slowly and i went to the family doctor and she asked me if my hair grows fast .for me ,my hair grows slowly but it is not thin like her and it is not the same rate like her.
when she checked her she said that she does not have any spots in her hear without hair and that is a good sign that her hair will grow but it takes time.
my other daugter her hair grow normal,it is not fast growimg but not like her sisterand the little one keeps asking me ,mom i want my hair grow like rapanzul.
please could you let me know if any one has the same problem?
the second question is my daughter will go to school next year and i am sure her friend will notice her eye.
please if you can tell me how can i prepare her to face that and what i have to tell her about her eye in that age ?
she did Y-split of the lateral rectus muscle which cure the upshooting only,but did not help with the lateral movement and sh still have head turn.\
her doctor witing her face gettibg bigger to do another surgery in the horizontal muscle.
Thanks in adavance for your help

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

From: Candice Forbes

To: duanes@yahoogroups.com

Sent: Saturday, December 05, 2009 9:39 AM

Subject: Re: [duane's] To cut or not to cut

 

Unfortunately you have hit on the dilemma that many of us have been through, including myself.  There is a vast difference in opinion for surgery in small children.  Here is what I understand.  

The ones against the surgery are afraid of a vertical deviation( the eyes not lining up in the up and down position).  While our children can deal with a horizontal change, the vertical change is quite different.  If it is not dealt with appropriately (meaning another surgery within 24 hours) then the eye can be shut down by the brain forever.  Five to six seems to be the break point on where this can happen.  Younger than 5-6 and you are in the "danger" zone.  Over 5-6 and the risk lowers significantly.  It has to do when the brain "sets" the eyes.

The other doctors (including Dr Rosenbaum) believe that better surgical results are achieved before the 5-6 years of age.  They take advantage of the same lack of "set" eyes so that the brain can "lock" in a more corrected position.  These doctors will also tell you that if a vertical deviation occurs they will take the child back into surgery the next day.  And that is not without risk.

In all honesty this caused many months of heart ache for me.  However, Dr Rosenbaum did 4-5 surgeries a month on Duane's kids and the other doctor did 3-4 a year.  I went with the better track record and the hope of more knowledge.  The gain has been incredible for my 6 year old son.  He has survived 1 1/2 years of school without one teasing incident.  No one knows he has an issue except the teacher that I tell every year.

All this to say, Duane's is rare.  If a surgeon or doctor is not very knowledgeable about Duane's, I would hesitate to use them.  Many of us have chosen Dr Rosenbaum at UCLA for just this reason.  

I can only imagine that this information will only add to your anxiety.  Just know that many of us have been there before!  And someone walked us through the process too, so ask more questions when they come.

God Bless, 

Candi  

On Dec 5, 2009, at 10:55 AM, Ashley wrote:

 

My 22-month-old son has Duanes type 1 left eye. He was diagnosed at 9 months and we have been seeing an pediatric ophthalmologist since then. At our last appointment she noticed that his left eye has become a little more pulled in than she would like. Although he is just a little far sighted, she wants him to wear glasses to see if that would help and then evaluated him for surgery which we have scheduled in March.
Because she didn't carry glasses in her office, and because of insurance, we went to an optometrist office that had glasses for babies. He was recommended by my husband's friend who has Duanes. He has been seeing this doctor since he was very young. When we were in the office trying on glasses, the doctor happened to walk by and heard my son screaming, he wanted to know why we were getting glasses with such a light prescription for such a young child. I explained to him about the plan for surgery and he was very against it. Then he sat down and talked to me about how against surgery he is for a child this young and that he recommends eye therapy instead to teach him how to use his eyes correctly. I scheduled an appointment with him for an exam to see what he has to say.
So now I am really confused and not sure what to do. My son has a lot of developmental delays and sensory issues and I really want to do what ever is going to help him the most. Thank you in advanced for your help with this issue.

My 22-month-old son has Duanes type 1 left eye. He was diagnosed at 9 months and
we have been seeing an pediatric ophthalmologist since then. At our last
appointment she noticed that his left eye has become  a little more pulled in
than she would like.  Although he is just a little far sighted, she wants him to
wear glasses to see if that would help and then evaluated him for surgery which
we have scheduled in March.
Because she didn't carry glasses in her office, and because of insurance, we
went to an optometrist office that had glasses for babies. He was recommended by
my husband's friend who has Duanes. He has been seeing this doctor since he was
very young. When  we were in the office trying on glasses, the doctor happened
to walk by and heard my son screaming, he wanted to know why we were getting
glasses with such a light prescription for such a young child. I explained to
him about the plan for surgery and he was very against it. Then he sat down and
talked to me about how against surgery he is for a child this young and that he
recommends eye therapy instead to teach him how to use his eyes correctly. I
scheduled an appointment with him for an exam to see what he has to say.
So now I am really confused and not sure what to do. My son has a lot of
developmental delays and sensory issues and I really want to do what ever is
going to help him the most. Thank you in advanced for your help with this issue.

Hello everyone,
please i would like to ask you 2 questions,is there any relation between duanes
and the thin head hair?
as my daughter is type 2 duanes ,when she was young,the doctor say she is type 1
and now he told me that she is type 2.
she is almost 3and half years old and hse has thin hait ,i mean that her hair is
growing slowly and i went to the family doctor and she asked me if my hair grows
fast .for me ,my hair grows slowly but it is not thin like her and it is not the
same rate like her.
when she checked her she said that she does not have any spots in her hear
without hair and that is a good sign that her hair will grow but it takes time.
my other daugter her hair grow normal,it is not fast growimg but not like her
sisterand the little one keeps asking me ,mom i want my hair grow like rapanzul.
please could you let me know if any one has the same problem?
  the second question is my daughter will go to school next year and i am sure
her friend will notice her eye.
please if you can tell me how can i prepare her to face that and what i have to
tell her about her eye in that age ?
she did Y-split of the lateral rectus muscle which cure the upshooting only,but
did not help with the lateral movement and sh still have head turn.\
her doctor witing her face gettibg bigger to do another surgery in the
horizontal muscle.
Thanks in adavance for your help

Hi Tim,

I was born with Duane Syndrome in both eyes, and suffered from the "upshoot"
problem; as an infant I would have to keep my chin pressed against my chest to
look forward.

This was back in the 1980's, when surgery wasn't recommended for DS. Because my
case was so severe, my pediactric ophthalmologist decided to operate. I had the
surgery at 36 months and am SO happy I did. While my periferal vision remains
pretty much non-existent, they got both eyes aligned to dead center on the first
try. Now, the only time you really notice it is when I'm trying to look at
something out of the corner of my eye; since I adapted my head movements to
compensate, 95 percent of people never notice anything different about my eyes.

Probably 99 percent of my life has been completely normal. I got my drivers
permit at 16 and my license by 17 just like my peers. The only time it really
surfaces as an issue is when I need to check my blind spot; lane changes can get
tricky during rush hour and parking lots are nightmares.

Best of luck with your beautiful daughter, I'm sure they'll find the right
solution for her particular case.

Adam

--- In duanes@yahoogroups.com, "thoefer" <tim@...> wrote:
>
> 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"
> >
>

Hey, Anne and Amelie -

I am in the Houston area as well.  My son Erik has type 1 DS in the left eye,
and he didn't walk until 14 months.  He's just under 2 years old now and is
running all over the place like a champ.  He didn't like the grass at first, but
now he doesn't think twice about it.  I think it was just a matter of getting
used to the squishy walking surface.  Erik sees Dr. Gunderson of Coastal Eye
Associates, and she does not recommend surgery in his case.  We also got a
second opinion from Dr. Edmond at Texas Children's Hospital who agreed.  I don't
remember if they gave a measurement of head turn or not, but I do remember the
term "acceptable head turn" in the diagnosis.  Interestingly, Dr. Edmond's
college roommate had DS!

Now for the odd coincidence....my neighbor's 11 year old daughter has DS as
well!  She is active in sports and does just fine.  She just has to tell her
coach not to freak out if she gets knocked down and her eyes aren't pointing in
the same direction.

HTH,

Glenn


--- In duanes@yahoogroups.com, "ameliemeyer" <kima.melie@...> wrote:
>
> Hello Anne,
> I usually only lurk around here but I just wanted to wave out to you because I
am also in Houston and also seeing Dr Musgrove.
> Incidentally I am not entirely convinced about her and am still considering a
trip to see another specialist (when asked about headturn Dr Musgrove told me
that it couldn't be measured, so now I'm wondering if I should trust her on the
fact that surgery wouldn't be beneficial for my daughter).
> My daughter Clemence was diagnosed a year ago (at age 3) with Duanes type 1 to
3 in her left eye. We've checked her hearing since then and found it normal.
> Although my 4 year old does show similarities to your son, I would mostly put
it on a coincidence. Some kids are strongheaded, if you don't mind me saying,
and I wouldn't read too much into it. Also 15 months is not really late for
walking, but you already know that.
> I'd be glad to answer any further question if you want.
> Amelie
>
>
> --- In duanes@yahoogroups.com, "wileyae" <wileyae@> wrote:
> >
> > Hello~
> > I have posted a few times, but here I am again with some more questions!  I
am the Mom of a 15 month old son with Type 1 DS in his left eye.  We live in the
Houston area and we went to the best pediatric eye doctor (Dr. Musgrove) in the
area where she was very comforting in telling us about DS.  I left her office in
raised spirits; however, I am starting to think some of the other things I
battle with on a daily basis with my son may be a side effect of DS rather than
just dealing with an "active/busy" child.  I am hoping this group can help me
with some of my questions/ concerns that have come up since the last visit to
her.  Any help would be greatly appreciated as I want to learn everything I can
about this disease.
> >
> > 1.  Does anyone know if DS delays walking and talking?  If DS does cause
delays, at what age do children finally start to walk and talk?  I read a post
about this, but it tinkered off and no one really ever answered the question. 
My son is 15 months old and he does take about 6-7 steps and then resorts back
to crawling.  I understand he is not "behind" yet, but I was wondering if DS may
affect this.  I have tried to "help" him walk, but he has a very srong mind and
does not appreciate the help AT ALL.
> >
> > 2.  Do DS children have an aversion to grass?  Again, my son hates the grass
and I thought it might have just been one of his quirks, but maybe not???
> >
> > 3.  Last question...and this one is a stretch, but my son gets frustrated
very easily.  His grandmother said it best when she said, "he knows what he
wants and he knows what he doesn't want."  Again, it may just be his strong
personality coming through, but I thought I would just pose the question to the
group.
> >
> > Thanks for your patience in allowing me to ask these questions.  I promise
I'm not the "crazy" Mom, but I'm just trying to understand what I'm dealing with
in regards to DS!  Thanks!!!
> >
> > Anne
> >
>

"ameliemeyer" <kima.melie@...> wrote:

>I usually only lurk around here but I just wanted to wave out to you
>because I am also in Houston and also seeing Dr Musgrove.
>Incidentally I am not entirely convinced about her and am still
>consideringa trip to see another specialist (when asked about headturn
>Dr Musgrove told me that it couldn't be measured,

Uh, this doesn't sound competent at all!

>so now I'm wondering if I should trust her on the fact that surgery wouldn't
>be beneficial for my daughter).

I encourage you to see a paediatric ophthalmologist that is familiar with
Duanes.

Regards,
    Christoph Gartmann

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

From: ameliemeyer

To: duanes@yahoogroups.com

Sent: Thursday, November 19, 2009 7:56 PM

Subject: [duane's] Re: Mom of 15 month old with some "delayed" motor skills

 

Hello Anne,
I usually only lurk around here but I just wanted to wave out to you because I am also in Houston and also seeing Dr Musgrove.
Incidentally I am not entirely convinced about her and am still considering a trip to see another specialist (when asked about headturn Dr Musgrove told me that it couldn't be measured, so now I'm wondering if I should trust her on the fact that surgery wouldn't be beneficial for my daughter).
My daughter Clemence was diagnosed a year ago (at age 3) with Duanes type 1 to 3 in her left eye. We've checked her hearing since then and found it normal.
Although my 4 year old does show similarities to your son, I would mostly put it on a coincidence. Some kids are strongheaded, if you don't mind me saying, and I wouldn't read too much into it. Also 15 months is not really late for walking, but you already know that.
I'd be glad to answer any further question if you want.
Amelie

--- In duanes@yahoogroups.com, "wileyae" <wileyae@...> wrote:
>
> Hello~
> I have posted a few times, but here I am again with some more questions! I am the Mom of a 15 month old son with Type 1 DS in his left eye. We live in the Houston area and we went to the best pediatric eye doctor (Dr. Musgrove) in the area where she was very comforting in telling us about DS. I left her office in raised spirits; however, I am starting to think some of the other things I battle with on a daily basis with my son may be a side effect of DS rather than just dealing with an "active/busy" child. I am hoping this group can help me with some of my questions/ concerns that have come up since the last visit to her. Any help would be greatly appreciated as I want to learn everything I can about this disease.
>
> 1. Does anyone know if DS delays walking and talking? If DS does cause delays, at what age do children finally start to walk and talk? I read a post about this, but it tinkered off and no one really ever answered the question. My son is 15 months old and he does take about 6-7 steps and then resorts back to crawling. I understand he is not "behind" yet, but I was wondering if DS may affect this. I have tried to "help" him walk, but he has a very srong mind and does not appreciate the help AT ALL.
>
> 2. Do DS children have an aversion to grass? Again, my son hates the grass and I thought it might have just been one of his quirks, but maybe not???
>
> 3. Last question...and this one is a stretch, but my son gets frustrated very easily. His grandmother said it best when she said, "he knows what he wants and he knows what he doesn't want." Again, it may just be his strong personality coming through, but I thought I would just pose the question to the group.
>
> Thanks for your patience in allowing me to ask these questions. I promise I'm not the "crazy" Mom, but I'm just trying to understand what I'm dealing with in regards to DS! Thanks!!!
>
> Anne
>

Sent from my Verizon Wireless BlackBerry

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

From: wileyae

To: duanes@yahoogroups.com

Sent: Wednesday, November 18, 2009 12:57 PM

Subject: [duane's] Mom of 15 month old with some "delayed" motor skills

 

Hello~
I have posted a few times, but here I am again with some more questions! I am the Mom of a 15 month old son with Type 1 DS in his left eye. We live in the Houston area and we went to the best pediatric eye doctor (Dr. Musgrove) in the area where she was very comforting in telling us about DS. I left her office in raised spirits; however, I am starting to think some of the other things I battle with on a daily basis with my son may be a side effect of DS rather than just dealing with an "active/busy" child. I am hoping this group can help me with some of my questions/ concerns that have come up since the last visit to her. Any help would be greatly appreciated as I want to learn everything I can about this disease.

1. Does anyone know if DS delays walking and talking? If DS does cause delays, at what age do children finally start to walk and talk? I read a post about this, but it tinkered off and no one really ever answered the question. My son is 15 months old and he does take about 6-7 steps and then resorts back to crawling. I understand he is not "behind" yet, but I was wondering if DS may affect this. I have tried to "help" him walk, but he has a very srong mind and does not appreciate the help AT ALL.

2. Do DS children have an aversion to grass? Again, my son hates the grass and I thought it might have just been one of his quirks, but maybe not???

3. Last question...and this one is a stretch, but my son gets frustrated very easily. His grandmother said it best when she said, "he knows what he wants and he knows what he doesn't want." Again, it may just be his strong personality coming through, but I thought I would just pose the question to the group.

Thanks for your patience in allowing me to ask these questions. I promise I'm not the "crazy" Mom, but I'm just trying to understand what I'm dealing with in regards to DS! Thanks!!!

Anne

Hello Anne,
I usually only lurk around here but I just wanted to wave out to you because I
am also in Houston and also seeing Dr Musgrove.
Incidentally I am not entirely convinced about her and am still considering a
trip to see another specialist (when asked about headturn Dr Musgrove told me
that it couldn't be measured, so now I'm wondering if I should trust her on the
fact that surgery wouldn't be beneficial for my daughter).
My daughter Clemence was diagnosed a year ago (at age 3) with Duanes type 1 to 3
in her left eye. We've checked her hearing since then and found it normal.
Although my 4 year old does show similarities to your son, I would mostly put it
on a coincidence. Some kids are strongheaded, if you don't mind me saying, and I
wouldn't read too much into it. Also 15 months is not really late for walking,
but you already know that.
I'd be glad to answer any further question if you want.
Amelie


--- In duanes@yahoogroups.com, "wileyae" <wileyae@...> wrote:
>
> Hello~
> I have posted a few times, but here I am again with some more questions!  I am
the Mom of a 15 month old son with Type 1 DS in his left eye.  We live in the
Houston area and we went to the best pediatric eye doctor (Dr. Musgrove) in the
area where she was very comforting in telling us about DS.  I left her office in
raised spirits; however, I am starting to think some of the other things I
battle with on a daily basis with my son may be a side effect of DS rather than
just dealing with an "active/busy" child.  I am hoping this group can help me
with some of my questions/ concerns that have come up since the last visit to
her.  Any help would be greatly appreciated as I want to learn everything I can
about this disease.
>
> 1.  Does anyone know if DS delays walking and talking?  If DS does cause
delays, at what age do children finally start to walk and talk?  I read a post
about this, but it tinkered off and no one really ever answered the question. 
My son is 15 months old and he does take about 6-7 steps and then resorts back
to crawling.  I understand he is not "behind" yet, but I was wondering if DS may
affect this.  I have tried to "help" him walk, but he has a very srong mind and
does not appreciate the help AT ALL.
>
> 2.  Do DS children have an aversion to grass?  Again, my son hates the grass
and I thought it might have just been one of his quirks, but maybe not???
>
> 3.  Last question...and this one is a stretch, but my son gets frustrated very
easily.  His grandmother said it best when she said, "he knows what he wants and
he knows what he doesn't want."  Again, it may just be his strong personality
coming through, but I thought I would just pose the question to the group.
>
> Thanks for your patience in allowing me to ask these questions.  I promise I'm
not the "crazy" Mom, but I'm just trying to understand what I'm dealing with in
regards to DS!  Thanks!!!
>
> Anne
>

Hi Anne,
I'm very new here...but concerning the grass...I'm very confident
in saying it's not DS-related.  My non-DS 3-yr old daughter and
non-DS 3-yr old nephew both HATED the feeling of grass under their
bare feet when they were 1-2 years old.


On Wed Nov 18 14:57:49 CST 2009, wileyae <wileyae@...>
wrote:

> Hello~
> I have posted a few times, but here I am again with some more
> questions!  I am the Mom of a 15 month old son with Type 1 DS in
> his left eye.  We live in the Houston area and we went to the
> best pediatric eye doctor (Dr. Musgrove) in the area where she
> was very comforting in telling us about DS.  I left her office in
> raised spirits; however, I am starting to think some of the other
> things I battle with on a daily basis with my son may be a side
> effect of DS rather than just dealing with an "active/busy"
> child.  I am hoping this group can help me with some of my
> questions/ concerns that have come up since the last visit to
> her.  Any help would be greatly appreciated as I want to learn
> everything I can about this disease.
>   1.  Does anyone know if DS delays walking and talking?  If DS
> does cause delays, at what age do children finally start to walk
> and talk?  I read a post about this, but it tinkered off and no
> one really ever answered the question.  My son is 15 months old
> and he does take about 6-7 steps and then resorts back to
> crawling.  I understand he is not "behind" yet, but I was
> wondering if DS may affect this.  I have tried to "help" him
> walk, but he has a very srong mind and does not appreciate the
> help AT ALL.
>
> 2.  Do DS children have an aversion to grass?  Again, my son
> hates the grass and I thought it might have just been one of his
> quirks, but maybe not???
>
> 3.  Last question...and this one is a stretch, but my son gets
> frustrated very easily.  His grandmother said it best when she
> said, "he knows what he wants and he knows what he doesn't want."
>  Again, it may just be his strong personality coming through, but
> I thought I would just pose the question to the group.
>
> Thanks for your patience in allowing me to ask these questions.
> I promise I'm not the "crazy" Mom, but I'm just trying to
> understand what I'm dealing with in regards to DS!  Thanks!!!
>
> Anne
>
>

Hello~
I have posted a few times, but here I am again with some more questions!  I am
the Mom of a 15 month old son with Type 1 DS in his left eye.  We live in the
Houston area and we went to the best pediatric eye doctor (Dr. Musgrove) in the
area where she was very comforting in telling us about DS.  I left her office in
raised spirits; however, I am starting to think some of the other things I
battle with on a daily basis with my son may be a side effect of DS rather than
just dealing with an "active/busy" child.  I am hoping this group can help me
with some of my questions/ concerns that have come up since the last visit to
her.  Any help would be greatly appreciated as I want to learn everything I can
about this disease.

1.  Does anyone know if DS delays walking and talking?  If DS does cause delays,
at what age do children finally start to walk and talk?  I read a post about
this, but it tinkered off and no one really ever answered the question.  My son
is 15 months old and he does take about 6-7 steps and then resorts back to
crawling.  I understand he is not "behind" yet, but I was wondering if DS may
affect this.  I have tried to "help" him walk, but he has a very srong mind and
does not appreciate the help AT ALL.

2.  Do DS children have an aversion to grass?  Again, my son hates the grass and
I thought it might have just been one of his quirks, but maybe not???

3.  Last question...and this one is a stretch, but my son gets frustrated very
easily.  His grandmother said it best when she said, "he knows what he wants and
he knows what he doesn't want."  Again, it may just be his strong personality
coming through, but I thought I would just pose the question to the group.

Thanks for your patience in allowing me to ask these questions.  I promise I'm
not the "crazy" Mom, but I'm just trying to understand what I'm dealing with in
regards to DS!  Thanks!!!

Anne

Hello Becky,

my daughter was delayed in walking two. Actually we found out with the
neurologist that followed her that he head turn made her less stable than needed
to remained seated, witch did not permit good developpment of muscles. Moreover,
only one of her too ears works witch causes balance problems. My daughter worked
with a physiotherapist during 6 months, twice a week and finally walked at 19
months witch seemed very early to the specialists considering her problems.
Physiotherapy worked really very well to make her stronger, more confident, more
conscient of her body and more balanced.
The problem is that you need to find the good person who can understand how your
daughter is affected by her DS. We had to see 4 differents physiotherapists
before we found the good one!
I really encourage you to take that step. It proved, in my daughter's case, that
working out could really bring progress. Today, noone ever noticed my daughter's
DS!
I hope everything will get fine for your little Corinne.

Clara



----- Mail Original -----
De: "Rebecca Dagenais" <rebeccadagenais@...>
À: duanes@yahoogroups.com
Envoyé: Mercredi 18 Novembre 2009 15h54:39 GMT +01:00 Amsterdam / Berlin /
Berne / Rome / Stockholm / Vienne
Objet: Re: [duane's] Re: for Pat







My daughter, Corinne, is now 10 months old and the nurse from the Early
Intervention Program that comes to the house (she had a very traumatic birth and
is followed by the infants and toddlers program) said that she has low muscle
tone and that is why she's not crawling yet, and also expects her to be delayed
in walking. I was thinking that it's related to her birth history, but I wonder
if there is a link to the DS? She has DS type 1 in both eyes. Has anyone gone to
see a neurologist?

Becky

--- On Sat, 11/14/09, christielbell <christielbell@...> wrote:



From: christielbell <christielbell@...>
Subject: [duane's] Re: for Pat
To: duanes@yahoogroups.com
Date: Saturday, November 14, 2009, 7:27 PM




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
> >
>

Welcome! My son, Granger, is 8 months old today and was diagnosed about 6 weeks
ago with DS Type 1. I too am learning all I can about it. Your girls are
beautiful! I think you will enjoy learning from the others on the group. They
are all very supportive and quite knowledgeable.
Julie

--- 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 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"