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

<*> To visit your group on the web, go to:
    http://groups.yahoo.com/group/duanes/

<*> Your email settings:
    Individual Email | Traditional

<*> To change settings online go to:
    http://groups.yahoo.com/group/duanes/join
    (Yahoo! ID required)

<*> To change settings via email:
    mailto:duanes-digest@yahoogroups.com
    mailto:duanes-fullfeatured@yahoogroups.com

<*> To unsubscribe from this group, send an email to:
    duanes-unsubscribe@yahoogroups.com

<*> Your use of Yahoo! Groups is subject to:
    http://docs.yahoo.com/info/terms/