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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