Dear Worried Mom,

I think I can say the light is an issue for everyone
with adie's. I wear sunglasses all the time. Some
people do develop headaches because of the sun, I am
not one of them. If the sun is an issue for your
daughter, then ask the eye doctor about lenses that
auto-shade. In fact if your daughter says the sun
hurts her eyes, by all means do what ever it takes to
shade the sun from her eyes. In answer to your 3rd
question, yes, my reflexes are slow. I have them, but
a reflex check does not produce the same results as a
normal person and I am not that ticklelish either.
I've had adies for a little over eight years, as of
yet, my pupil has not gotten small. It isn't as huge
as it use to be. I have more trouble with shadows and
I can't explain double vision, because it's not really
double vision, but I see a thing and a shadow of the
thing close to it. I have adies in my left eye only.
I do require reading glasses now. I have contact
lenses that keep distance looking the same and then
plain dollar store reading glasses to read. In the
beginning I had to have bi-focals and different
strength in each eye because of the adies'. And to
help her "just love her", stess is a big factor with
adies. I'm not saying to spoil her, but notice when
things make her nervous or afraid. Maybe someone else
can comment on helping more. I find that when I eat a
high protein/low carb diet my adies gets better, but
I'm an adult not a child. Above all help her to learn
about her adies so she doesn't feel it's a death
sentence. Adies is mainly trial and error, what works
for one doesn't for another, but it doesn't hurt to
try different things as long as it is not life
threatening. Let her know that there are others in
her shoes. My best to you and your daughter. I will
put her on my prayer list.

ut--- natlevreault <natlevreault@...> wrote:

> Hello everyone,
>
> My 10 year old daughter was just diagnosed with
> Adie's syndrome.
>
> Going through the web, I realize that there isn't
> much interesting
> information about the symptoms and long term effects
> on one's life.
>
> During the exam, the doctor tested her nervous
> system reflexes (knees
> and elbows) and to my big surprise she had none! He
> confirmed this
> was due to Adie's Syndrome.
>
> He also told me that with time her pupil (which is
> quite dilated now)
> will end up shrinking to a very small size.
>
> As I read your messages, I realize that some of you
> have been
> diagnosed a while ago...and I have a few unsanswered
> questions (as it
> is sometimes hard to get precise information from a
> child and a
> doctor) for which your help would be very
> appreciated.
>
> 1. Is the light really an issue for someone with
> that syndrome,
> meaning is this what seems to cause the headaches?
>
> 2. She is now due for new prescription glasses;
> would it be justified
> to get her lens that auto-shade in the sun?
>
> 3. Have any of you noticed lack of nervous reflexes
> also?
>
> 4. If her pupil ends up being very small eventually,
> won't it be hard
> for her to see in the dark?
>
> 5. Does it have any impact on your vision (reading
> for example)?
>
> 5. Do you think there is anything I should be made
> aware of to help
> her?
>
> Thank you for your help.
>
> From a worried mom.
>
>
>
>


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