Kayla’s Story and Request for Help!

My daughter Kayla, was diagnosed with Uveitis 7 months ago. Since her initial diagnosis, she has been to see a neurologist. This specialist checked her for brain swelling, because her optic nerve was so inflamed they were afraid it was because of some type of tumor. They did a spinal tap and checked her for every kind of disease they thought she might have, including most of the ones I’ve read that are associated with uveitis. They found nothing but an elevated reading in her spinal fluid. So they sent her to a rheumatologist who also did tests for JRA and several types of autoimmune diseases. Meanwhile she’s been steadily seeing several ophthalmologists, who had her on steroid drops every 4 hours around the clock for 6 months until the inflammation died down. Now she’s on 2 drops a day.

The rheumatologist found nothing abnormal with her immune system, and her regular physician found nothing abnormal in any of her cat scans, MRIs, and blood work. Her inflammation did go down, but her eye sight is currently at a 20/100 in both eyes I believe. I’m not even sure if that’s correct. I know she can only read the biggest letter on the eye chart, and before her diagnosis she did not have glasses.

We’ve stopped going to specialists, who just tell us, “well I guess we’ll have to sit back and wait to see if anything manifests.” Her current Ophthalmologist is great and very helpful. Unfortunately this disease, especially in my small town on Chippewa Falls, Wisconsin, is unheard of and no one knows anything. I feel like my voice isn’t being heard. I’m afraid of what will happen to my daughter. I keep reading about glaucoma with steroid use, and blindness. I am researching, but I still don’t know anything that is helpful to me. I am lost and I know I’m the only person who is going to be able to push this to where it needs to go. Children can have just uveitis with no other diseases or illness’ right? This is what every doctor keeps telling me. How common is that? Any suggestions, links, answers, etc would be most helpful to my beautiful 11 year old daughter, Kayla.

Thanks you,

Sheila

Please respond to Sheila via email: mikkeyann@hotmail.com

  • Online Physician Forum

    Our Online Physician Forum is currently under development. Please check back periodically.
  • Twitter Feed