--- In duanes@yahoogroups.com, "catrinhorrex" <catrinhorrex@...>
wrote:
>
> Hi
> sorry about the subject line - wasn't sure of your name. I was
> rather freaked to start with too but have calmed down now. My
> daughter (E) has glasses because the consultant discovered she is
> also Long Sighted. I think you would know if your son had
> Goldenhaars - I've researched it a bit and the symptoms seem to
> relate to problems with the spine and neck but also heart and
lungs -
> I guess that is the bit that concerns me. E has to wear her
glasses
> for 4 months and then will be reviewed. I'm not convinced how much
> our consultant knows about Duanes or indeed how often she's come
> across it as she seemed to think that the outcomes of surgery are
so
> up and down its not worth it, that patching would never work (I can
> see her point here)and that the glasses alone would straighten the
> eyes! What I have done is to contact the "Visual Impairment Support
> Service" that we have in this county. They have been very helpful
> and have promised to come out and see us in January to assess E's
> needs and check exactly what the issues are. I was a teacher in a
> previous life and so have some idea of how tricky she could find it
> once in a classroom. The Visual Impairment team have an Early Years
> Specialist who can look after E's needs (including at school) until
> she's 7 if necessary.This team is linked to our Local Education
> Authority. So I guess they would be your first port of call. I'm
not
> sure of where you are, so don't know if the system is similar. We
> are in East Anglia in the UK.
> Thanks for your message - keep in touch and we'll share progress
> updates!
> Catrin
>Hi Catrin,

I'm so sorry I didn't sign my name! I'm Sally and I live in Ohio,
USA. Our doctor also said my son is far sighted but to a degree that
is normal for his age. Because he looks completely normal until he
turns his head and his eyes cross the doctor said he doesn't have
Golden- Hars syndrome. I was still worried so I looked it up online
and am less worried as these poor kids have striking physical
abnormalities.We'll see the doctor again in February and discuss what
to do next. Hope Baby's first holiday season is blessed!

Sally