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