Hi Sarah-
I did read your long email. I know I tend to write long emails too, especialy
when I have a vested interest with similar problems. I too have "Photophobia",
However, on a different scale than your daughter. I am 45, and I just started 3
1/2 months ago to have "Photophobia" with multiple tests and the only problems
that any of the Doctos can come up with is "Dry Eye" and " Blepharitis" they
still don't know why I have the severe light sensitivity or the migraines, which
are due to light sensitivity.

I feel for you 100%. Even though I am not taking care of a child with this
problem, taking care of myself and my family and troop of animals is very trying
at times.I did see a show on TV not too long ago about a child that had such a
sensitivity to light and the child wore a special suit so she could go outside
and live a "normal" life and play out side like the other children. I think I
saw the program on www.WZZM13.com It was maybe a year ago when I saw it. Might
help not sure.

I was wondering the same thing about whether or not Irlen Syndrome and
Photophobia have any similarities or if they are different. I will try to check
online. My problem is that I can only handle being on the computer for about 15
minutes and that is with a Glare Guard for my computer and a strong pair of
sunglasses, I f I am on too long my eyes burn worse than they already do and the
headache starts up.

Good-luck and don't give up, I think If I were a child I would probably scream
and act up too. It is very painful so I feel foir you daughter.Most of the time
I get no relief, and screaming would only hurt my eyes more, My other senses are
heightened with this Photophobia, so I am sure your daughters are too. Be
patient with her, try to play quiet games with her and soothe her. I think that
she would respond to dark and quietness. I keep my bedroom dark and it is my
favorite place where I can unwind and be in " my space".

Enjoy your daughter while she is young dispite everything that she is going
through she needs your continued support-

Thank you for listening and I hope I have given you some ideas-
Christina

"S. Lowery" <angelb@...> wrote:
Hi all,
I'm Sarah, and new to the group, my 4yr old daughter Megan has a few problems to
say the very least.
She is very smart and is already reading, doing math, spelling, writing,
science, art, and geography, I home school her and have taught her everything
she knows. When she was 2 yrs old she started reading words and at that point
discovered that she is Dyslexic and was having an extremely hard time with just
about everything.
anyway she was also dx with sensory integration dysfunction, and we thought she
had food allergies and started wearing glasses at age 2 also..
one of the problems that she had since birth was that everytime i would take her
out side for any reason, when she would get in the sun she would scream her head
off, which the drs said was because of her sensory problems.. and told me to
keep her inside as much as possible and that one day she would grow out of it,
and well when she turned 3 she started talking about going out side, so when
spring hit she was determined she was going out side no matter what.. so i let
her go and an hour later she had a horrible rash and her face and skin and eyes
were swelling and her lips looked awfull, so i called the dr and took her in and
he said that she is Photosensitive.
the summer went by and of course everything got worse, and so jan of this yr
comes up and we had a really good snow, so i covered her up and put on her hat
and sun block and let her play in the snow for 15 mins, and she ended up with
second degree sun burn on her face.. UHG.. well it scared the dr so badly that
they started making appt's for her to see specialist, so in feb we saw an
immunologist who narrowed it down to either EPP Porphyria or Actinic Prurigo...
so she ran a test for the EPP and it came back normal, but then found out she
ran the wrong test... so now we are waiting to see a hematologist on the 31st..
and a dermatologist on june 7... 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, and so he had me get two pair of glasses for her, one inside pair
with rose tint on them, and a second pair with polarized
tint on them.. so her eye dr is saying that he thinks her eye problems stem
from her photosensitivity.. which is highly possiable... so he has me patching
her right eye for 3 hours a day for 6 months to strengthen her left eye and of
course he uped the strength of glasses also..
but the tint on her glasses have made a HUGE differance...
so im sorry my email is so long and i hope i havent bored anyone ..
but my question is,, and i hope i dont sound stupid.. but is photophobia the
same thing as Irlen syndrome? can someone tell me more about it.. i need to
understand things a littel better, and if i need to answer some questions for
you all so that you can help me i will gladly answer them... so below is a list
of her problems without the story.. LOL
sensory integration dysfunction
dyslexic
photsensitivie skin (could possibly be autoimmune disorder causing it)
photophobia (of the eyes)
farsighted and astigmatism in both eyes, along with lazy eye and half blindness
in left eye.

and also i would like to know if this condition can cause behavior problems,
like acting out, or making her cry alot and get over whelmed alot? megan seems
to cry so much, and i dont know why and she isnt telling me why, and idont know
what to do, i dont know how to help her, ... what she does is, she crys when we
go anywhere, crys when i talk to her, crys when i play with her, crys when she
does school work, crys at the drop of a hat for no reason what so ever... after
having read what this groups home page had to say i wonder if her photophobia is
causeing her to have this cryng problem and acting out thing..
im desprate to help her, and at this point im so over whelmed with everything,
and still going through seeing a dr every week and trying to figure out what is
causeing her photosensitivity is just killing, and then having to take care of
her normal needs and school stuff, and im in college too and i work from home
and im singel and i have no help from no one at alll ever, i get no break from
anything ever, and i also manage the apartments i live in and dealing with all
that crap, along with house hold chores and just every thing i have to do every
day ... there are not enough hours in the day to do it all and so im always
behind on everything.. and throw megans crying in on top of all of it, i jsut
dont know what to do or what is causeing her to cry so much.. if anyone out
there has any advice, any suggestions, any ideas, anything that might give me a
clue as to what to do to help her ... i would so appreciate it and would be so
grateful..
thank you for leistening to my very long email
Sarah


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