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
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