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