Your stories: winning against uveitis

This story came from Natalie.  -Ann Z

1 in a 1000 children are living with juvenile arthritis. My 3 year old daughter is one of them. She was diagnosed at 20 months.

Around 20% of these children, particularly young girls, are eventually diagnosed with uveitis. For my daughter, this happened one year after her original diagnosis. It hit fast, and it hit hard. With systemic prednisone, prednisilone eye drops, and an increased dose of methotrexate, we were able to halt the first flare.

Yet, her vision problems were just beginning.  Uveitis can cause numerous secondary problems, and my daughter seemed to get most of them.

She has synechia. Even after months of atropine drops her pupils will not fully dilate.

She has a small cataract in her right eye.

She has amblyopia. The vision in her left eye is 20/25 while her right eye has recently improved to 20/200 from 20/400.

She wears glasses for far-sightedness and astigmatism. Yay! A normal childhood issue!

So many problems for such a tiny girl. However, we are not throwing ourselves a pity party. My daughter is strong, brave, and wise beyond her years. She doesn’t remember life before uveitis. I do, and there are times when I feel so very alone in this battle. Patching, medications, appointments – she can’t do any of that alone. We do it for her to save her sight. Some children with uveitis go blind. But not my daughter. At least not today, and not tomorrow either. Right now, in her doctor’s words, she is winning.

You can read more at Natalie’s blog My Teeny Tiny Champion.

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3 responses to “Your stories: winning against uveitis

  1. okay so my daughtet is five now we have been patching for two years and it seems like i have lost my child doing this i have done everything from explaing why i patch her good eye to bribes i dont know what to do it is to the point where i have to have her dad hold her down and while i put the patch on her eye we have baught every kind of patch there is once they are on her all she does is cry it kills me i found out two years ago that she had a very larg cataract in her left eye making her totally blind in that eye i had taken her to the eye doctors before and they swore up and down she was fine untill dec. of 08 when i stood up and said listen i dont care what you keep sayin there is something wrong with my childs eye she was walking in to walls and would reach over things that she was trying to grab and turning her head in all different ways when trying to see something now i was on here earlier today and i had seen that they have used atropine eye drops to blur the vision in the good eye forcing them to use the bad eye for lazy eye patients why cant we use that for children recovering cataract surgery they put the artifical lens in her left eye and gave her glasses put none of that will do anything till she stops using the right eye the good one and trains the left how to function i dont know what to do anymore someone please help my daughter is a beautiful little girl with a heart of gold and now she is mean and upset and seems to hate everyone anymore because of this ya know i just need help i dont want to lose my first born baby girl over this sometimes i wanna just let it go so i can see her smile even if its just five mins but what kind of mother would i be if i didnt force my kids to have the best life they could possibly have please help i have no more opions

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    • Oh Tanya, you and your daughter have been through so much! My heart goes out to you. It must be so hard for your daughter to patch when she has so little vision at the moment, and so hard for you to push her to do that, even though it’s the right thing to do. I don’t know why atropine is not an option for your daughter – have you asked her ophthalmologist about it? I have heard that atropine can be less effective, particularly in cases where the weaker eye is very weak, because the strong eye with atropine is still stronger than the weak eye. I know that some parents have also had a lot of difficulties with their children on atropine, so it isn’t always the silver bullet that people would like. But in cases where a child won’t comply with patching, it does seem like an option worth looking in to.

      Please keep us updated on how things are going!

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