About Me
I'm a single mom of two great teeagers. Really, they are the best kids. I've been divorced for 13 years. I'm currently attending college to get my degree in health technology. I live in Louisiana. I am an avid animal lover and will rescue and take home any stray. I have a 16 year old daughter who was stricken with stevens-johnson syndrome three years ago. She was only 12 when this happened . I almost lost her. She is the bravest person I know. I watched this child suffer with some of the worst pain I've ever seen anyone go through. She has had cataract surgery on both her eyes because of the steroid drops she has to use in her eyes every day. She has severe asthma. Her eyes don't make tears anymore so we have to buy 12 bottles of artificial tears every month and she has to use these drops about every five minutes. She uses atropine drops in her eyes at night to stop the muscle spasms so she can keep her eyes open, otherwise they would stay shut all the time. I would love to talk to anyone who has been through this so I could ask if there are any new treatments for the after effects of this horrible condition. Especially the dry eyes and the steroid drops because I worry about the long term effects of her using the prednisone and atropine. I trust her doctor but I would like other opinions from the medical community on whether or not it's necessary after three and a half years for her to keep using these drugs. I don't want her corneas to scar that's the only reason I have kept this up. She has been so isolated these last few years and in pain for a lot of it but she has the best spirit. She's amazing that she hasn't sunk into a depression. I'm so proud to know her.
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Hey Debbie,
I am glad you added mr to your friends list. I have researched your daughters secondary eye problems following S-J syndrome. Your best bet in this most challenging problem is to be referred to a tertiary eye care center. Even the most subspecialized ophthalmologist is left with preventing future corneal scarring and potential vision loss by using combination steroid/antiinflammatory/immune modulating drugs and drops. Sounds as if her ability to make tears and keep her cornea moist is the main problem. I see her long term best option, short of stem cell research and advances that may some day restore the normal function of her lacrimal glands, is to search for less complicated longer lasting lubricants and wetness drops/ointments and to continus with prednisone to prevent further compromise of the cornea. Be on guard for fungal and or herpetic infections while on the steroids, as her risk for these is a bit higher than normal. You know, eye pain, purulent disharge, redness, etc...
Good luck and I will keep my ear to the ground!
Brad
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