Alex’s eye now moves to mid line, but he does not have any
further movement than that. I do know of others on this group whose eyes have
movement since some operations.
Keep asking and keep pushing is what I suggest. Alex started to
stop using his right eye, which was a concern of mine, with the bullying too I
pushed for more to be done and I am so glad I did.
However, all of the other family members have not needed any
intervention!
Does this help
Shelley
From: duanes@yahoogroups.com
[mailto:duanes@yahoogroups.com] On Behalf Of Gemma Bosher Sent: 06 July 2009 20:58 To: duanes@yahoogroups.com Subject: RE: [duane's] BOTOX, UK AND MORE
Yes, thank you for getting back to me. I take her to
our local hospital every three months at the mo. because she is being closely
monitered for the sight in her effected eye but I take her to the moorefield
once a year in the hope that if any new treatments become available they
would be the first one's offering it! when I go next week I will mention
about the botox. Can I just ask you, does this make Alex's eye move as
in looking from side to side after the botox or does it just help the eye to
be in a more central position? I do get a bit confused because when I took
Ruby to Moorefields they said that nothing would ever make the eye move again
(she has vertually no movement in her right eye)but they said if she got a
head tilt they could operate. I just can't believe that in this day in
age they can't make the eye move properly or have I been miss-informed?
thanks for your time, I don't know anyone else with a child with this
condition and have had to do a lot of research myself and it's just really
nice to talk to someone who's been there and done it! Ruby is my first child
and all the info can get a bit confusing. Many thanks again.
Gemma
--- On Sat, 4/7/09, petshell <petshell@...>
wrote:
From: petshell <petshell@...>
Subject: RE: [duane's] BOTOX, UK AND MORE
To: duanes@yahoogroups.com
Date: Saturday, 4 July, 2009, 7:47 PM
GEMMA
Mr
Lee told us the same thing too when Alex was younger. However, his eye worse.
looking back if I had the knowledge I have now i would ask for botox before
any eye operation!
Does
this help?
Shelley
From:
duanes@yahoogroups.com [mailto:duanes@yahoogroups.com] On Behalf Of Gemma
Bosher Sent: 04 July 2009 20:09 To: duanes@yahoogroups.com Subject: Re: [duane's] BOTOX, UK AND MORE
Hi Shelley, I've just read your message about the botox injections
your sons been having. Just thought this was really interesting as my
daughter Ruby (13months) has been to the moorefield, she has type three
Duanes and it's in her right eye. She's got another appointment next
week and I've still been hoping that there might be some sort of break
through for her to be able to move her eye, is it worth me asking about
botox or does it only suit some people? they said they wouldn't go down the
surgery route until she was old enough to say she wanted it her self, and
i'm unsure that I'd want her to go through that anyway. If there was
a less invasive solution then that would be great. I'd appreciate any
advice you may have.
Gemma (Oxfordshire)
--- On Sat, 23/5/09, petshells <petshell@...>
wrote:
From: petshells <petshell@...>
Subject: [duane's] BOTOX, UK AND MORE
To: duanes@yahoogroups.com
Date: Saturday, 23 May, 2009, 1:04 PM
Hello,
I have not been as busy on here as I have in previous years but have been
reading posts with interest.
However, I also lives in the UK and have a son age 15 with bilateral
Duanes, his twin sister is a carrier but does not show any symptoms. My
step son 23 and step dauther 24 also have left side Duanes as does there
father. (although in their father and my stepdaughter, there is very slight
restricted movement in the right eye too, so it is possible theirs is
bilateral).
Anyhow if you check back my posts in the history you can see some of the
trials and tribulations we have gone through.
Check out the photo section for ALEX, you will be able to see before and
after photos of VRT and BOTOX.
Alex is seen by Mr Lee at Moorfields every 3-5 months for his botox
injection in his right eye (which was his more severely affected eye -but
is now his better eye!).
neither MRR or VRT was sucessful for Alex and in fact both operations
resulted in the eye worsening (going in further towards his nose).
The left eye has never had any operation or botox (although Alex is going
to be asking if this can be done soon).
the Botox came about due to the unsuccesful surgery. its aim was iniially
to be diagnostic (to see if her would ever have any eeye movement). the
results were astounding and as a result Alex has continued with these ever
since.
So any regrets over the years? YES! I wish we had found botox earlier,
before Alex went to senior school and was constantly teased as it really
lowered his self esteem. I don't see any of this as cosmetic, all Alex is
asking is that he looks centre on when talking to someone, which is what
most people are able to do, he isnt asking for anymore.
If the child is not looking centre on or has a head turn or tilt i would
definitely fight for something to be done.
No one else in the famiy has had any surgery as their Duanes is not 'that
noticeable'. My step daughter has never had any teasing, my step son has
and although it isnt that noticeable it still bothers him.
we also have family members with okihiro type duanes (have other issues
with thumbs, shoulders etc).
Alex usually manages to ensure his botox injections are done around school
holiday time as unfortunately he does end up with temporary ptosis (eyelid
droops) and his 'friends' tease him!
Anyhow, check out the photoes as they can explain much more! I will try and
put a recent picture on too so you can see him all grown up.
regards
Shelley
Colchester Essex UK
------------------------------------
To Unsubscribe: Go to: http://www.health.groups.yahoo.com/
Login using your username
Click on "duane's."
On the right side of the Duane's page, click on "Leave
Group." OR you may prefer to edit your preferences to
"Daily Digest" (one email with all messages) or "No
Email" to continue to access the site. Yahoo! Groups Links
Hello, I have not been as busy on here as I have in previous years but have been reading posts with interest. However, I also lives in the UK and have a son...
It causes temporary paralysis of the muscle in the eye so it cannot tighten! Google duanes and botox there is a bit of info about it Shelley ... From:...
Hi Shelley, I've just read your message about the botox injections your sons been having. Just thought this was really interesting as my daughter Ruby...
GEMMA Mr Lee told us the same thing too when Alex was younger. However, his eye worse. looking back if I had the knowledge I have now i would ask for botox ...
Yes, thank you for getting back to me. I take her to our local hospital every three months at the mo. because she is being closely monitered for the sight in...
HI Alex's eye now moves to mid line, but he does not have any further movement than that. I do know of others on this group whose eyes have movement since some...
Yes, this does help. Thanks, I will keep on at the docs and hopefully one day Ruby will be able to move her eye. Until then we just enjoy having a gorgeous...
Having problems with message search?
Offline 
Send Email