LU
Hi thank you for responding to my email... i know it was very long, but i just
had so much to say.. LOL
LOL i thought it was funny that you said what you did about the dr being short a
few french fries...LOL.. yeah that was what i thought to back then and now...

I will let you know what they find with the blood results, thank you for asking
about that, it is very nice of you to want to know, and that your intrested.
oh deffinately megan will lie to me and say "no mom my skin is not stinging me,
it doesnt hurt" untill it starts hurting her so badly that she cant sleep from
the pain. she doesnt care half the time if it hurts her or not... HOWEVER ...
she does do alot of playing in the shade and trying her best to avoid the sun as
much as possible all on her own.. shes very brave..
and yes im very extremely proud of her... she is very smart.. and she uses a lot
of big words.. its funny to hear her say those big words too... she things
like... "im exzasberated mom" .. i probally didnt spell that right so i hope
you know what im trying to spell... but the word means ... tired.. hard. out of
breath... hurt.... ( i think) LOL LOL ... i didnt teach her that word, she
learned that one from a cartoon called pinky dinky doo.... LOL... but we do a
word a week... pick a word from the dictionary and learn its meaning, spelling
and how to use it in a sentance then use that word as much as possiable for the
week.. LOL..
anyway she know 10 states... LOL but she really likes thing maps, and where
places are located and how to get there, and other countries... esp egypt..

yes she has problems with indoor lighting.. esp floresant lights and halogen
lights... and lately with reg light bulbs.. but since we found out about the
photophobia, and the tints and things... the eye dr suggested we use soft pink
light bulbs... and those have been better for her... and btw.. the dr did test
to see which color tint would be better for her and how dark the color should
be... and now when i say tested her for color.. he simply .. well first you know
the thing you look through when they check your eyes, and they flip the lens
until you see well... he has differant shades of tints that he can flip also
untill the perfect tint shows through.. so when he hit the rose tint she loved
it, and then he flipped through the differant shades of rose untill he found one
that worked best for her.. and thats the color we had put on her glasses, same
thing with the polarized tint.. he didnt start with polarized tint, he started
with reg dark tints in a sun light effect setting.. she has a reallllyyyyyy good
eye dr..

and my first quesiton was is photophobia the same thing as irlen? i was asking
that because of what the groups home page says about it.. it said something
about irlen syndrome also known as photophobia?

may i ask what you would like to know more about? the photophobia?
Actinic Prurigo? EPP? photosensitivity? LOL.. i have links for all.. i can send
them all if you want to ... but the photosensitivity is very generalized and
tells about everything that causes it.. so theres alot of info about
photosensitivity its self... and since they have narrowed it down to being one
of the two things.. if your going to read about anything i suggest you the two
about AP and EPP...

i will go look into the site you were talking about for the irlen stuff.. and i
have been thinking about counseling for both of us... and i probally will go to
see one.. that was a good sugestion you had about that and the other stuff with
the support and what not..
and your right it is very stressfull ... thank you for seeing that, no one else
does.. everyone thinks that since i stay home with her .. then i dont do
anything... uhg! its so frustrating also having to deffend my self about that...
no one has a clue, except for you... you deff have a clue.. thank you so much
for seeing that, you dont know what that alone has done for me...
i will write you more later and also i will email back with a response to
christina too... im just really tired.. i hope you understand.
sarah

----- Original Message -----
From: brainstormwriter
To: glimmercoloredfilterglasses@yahoogroups.com
Sent: Monday, May 22, 2006 6:48 PM
Subject: [Glimmer 'Colored Filter Glasses'] Welcome Sarah and Megan


Hi Sarah,

I enjoyed reading your post, as it was helpful to know what you are
dealing with. I am sorry your little 4-year-old daughter suffers from
such an extreme from of light sensitivity. I am not a doctor to dx
exactly what is wrong with your daughter, but one thing is for
sure...she is sensitive to light exposure.

I am glad that your doctors are now trying to help, but who ever you
went to first sounds like they are short of a few French fries in
their Happy Meal. Especially, since she would scream her head off when
she would go out in the sun. I wish they had done the necessary
testing early on so to preserved her vision more ("so anyway, it was
time for her yrly eye appt,and the eye dr said her vision had gotten
worse, and her left eye is litterally half blind, and her left eye has
lazy eye, and he dx her with Sever Photophobia"). Please let us know
what they dx her with (EPP Porphyria or Actinic Prurigo).

One thing I have learned from children, and that is regardless of what
serious medical problem they have...they want to play and will work
around it to do so...even if it makes them worse. I am glad that you
are on top of this now.

You have done wonders home schooling her. How proud you must feel by
her reading, doing math, spelling, writing, science, art and
geography. How many states does she know?

You did not talk about her being light sensitive to indoor lights, and
I like to know more about it. Your question if Irlen syndrome is the
same, and my guess is that it is not. You can go to the links on the
side of the navigation bar, and find a link to contact at her web
site. I am sure she would love to hear from you. Her website also has
great examples of Irlen vision problems, and you can work with your
daughter to see if she experiences them.

I do find it interesting that the doctor RX your daughter to wear rose
tint glasses as it sounds like Irlen's Colored filter glasses, but the
difference is that the right color is tested for your eyes with Irlen
Syndrome. It sounds exciting that they work, as they have made a huge
difference in your daughter's vision, which makes her sound like a
good candidate for Irlen glasses, but I suggest you go through Helen
Irlen for advice due to your daughter's severe light sensitivity.

Regarding her behavior problems they could be caused from repeated
challenges she has had to endure from her medical condition and so
this question is better answered from a child psychologist who knows
what he is talking about. Have you sought for one? She may need this
extra kind of support to help preserve emotionally to help her avoid
feeling too troubled. You also need to have support while you are
going through such a challenging life yourself. Being single, working
at home, going to college, managing apartments, household chores, and
feeling defeated all of the time due to being behind on everything. It
seems you are dancing as fast as you can. On top of that Megan
crying...that must be heartbreaking for you…too much stress…

Once you get yourself organized as to what is really Megan's medical
dx you can then start a search for a 12-step program for single
mothers who are raising children who have this type of medical
condition who are alone. You can contact your local
community...doctors...online search... The purpose is for you to have
support like 12-step friends who will be there for you when you need
someone to listen to you. I am so glad to here asking for help, it
shows how courageous and strong you are. Keep up the good work, but
remember, to look for support for yourself so that you can keep going.
You are welcome to contact me anytime you need here, and if later you
want to contact me through my e-mail we can work something out.

Lu








SPONSORED LINKS Health and wellness Health wellness product Health and
wellness program
Diet fitness health nutrition wellness Health promotion and wellness
Business health wellness


--------------------------------------------------------------------------------
YAHOO! GROUPS LINKS

a.. Visit your group "glimmercoloredfilterglasses" on the web.

b.. To unsubscribe from this group, send an email to:
glimmercoloredfilterglasses-unsubscribe@yahoogroups.com

c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


--------------------------------------------------------------------------------



[Non-text portions of this message have been removed]