Good morning. I have a 5 year old daughter who was diagnosed when she was 4 months old with NF1. For quite some time she's been rubbing her eyes frequently throughout the day everyday complaining of pain and irritation. I took her to see her opthomologist who said she has a stigmatism and additional lisch nodules since her last visit. However, he couldn't find any reason why her eyes would be irritated or painful. I am hoping that someone can help me that understands what can be happening. It hurts my heart to see her go through this and have no idea of what I can do to help her. Any help from the this community will be greatly appreciated.

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She might have eye issues so u may need to take her to the dotcor because with diease you have eye problems .I was diasognois at very young age to but it was into after i was born that the dotcor discover that i had eye problems .I do have this advice for you make sure that the dotcor is inform about everything that going on make sure the dotcor know about the diease first because it hard to find a dotcor who know about the diease

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My eyes are super sensitive.... to make up, to light, even to certain colors. When I was 5 my mom took me to the doctor about eye pain and he gave me cream to put in them. Then my mom ran out of her favorite lotion (that she used to put on me) and my eyes magically stopped bothering me. Turns out I was just sensitive to the lotion.

Do you put any kind of lotion on her face? What kind of shampoo do you use and does it ever get in her eyes? Does it have to do with certain lighting conditions? (neon lights drive me batty).

Just some ideas.

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Thank you so much for responding. Because of her constant discomfort I don't put any lotion on her face and I use a wet cloth to wash her face. Your story is exactly the same. I'm actually tearing up right now because I don't know what else to do. The opthomologist that she went to has been her specialist for the disease since she was diagnosed and he gave me no advice to help her eyes other than to prescribe glasses for the stigmatism.

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Thank you very much for responding. What did they do to help you with your eye problems?

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My eyes are very sensitive to a lot of things.....they get red and sting a's miserable....The things that help me the most are allergy meds, either a antihistamine or antihistamine/decongestant combo....(ask Dr. first)....that and eyedrops, Visine makes a drop called Visine A.C. My eye doc. said not to use OTC eyedrops .....(but I do sometimes).....She recommended Sysyane Ultra or Refresh Ultra.....they are OTC also but work more on moisturizing and comforting instead of "redness relief". If I go too long without my Alavert-D, you can see it in my eyes. Allergy misery.

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Has she had an MRI? They could definitely pick up something the Opthomoogist missed, Best of luck.

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