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• im frustrated!!!
• Posted: 2009-08-11 22:39:32 By
• ok i need you advise...
  My 8 yr old son has been diagnosed with xlrs for just over 2 years now. We were going to Bascom Palmer Eye institute in miami which was wonderful. We recently moved to Omaha Nebraska. My specialist in miami wanted him to go all the way to Iowa city to a specialist there. She wanted him to try the Trusopt drops but couldnt put him on since we were moving and she couldnt follow his OCT's. Insurance of course doesnt cover them. I saw a local retinal dr yesterday and he doesnt believe in the Trusopt drops. Do you think they really can work?? i will pay out of pocket to go if that is what he needs. I dont think his local dr deals much with XLRS by the sounds of it...so frustrating!! He has had recurrent vitreous hemmhorages and no longer plays baseball as he can see the ball till it gets right in front of him...if eye drops can help some, even just peripheral, i would love to know. Ive done all i can with limiting sports, he is in the study through NIH/NEI they did the genetic tests for us, but now im stuck in nebraska with no resources here???? Any input?
  thanks so much

• Nebraska University Medical Center in Ohaha
• Posted: 2009-08-12 17:34:20 By Michael P
• Check with the Nebraska University Medical Center in Omaha for a retina specialist or referral to a specialist in you insurance plan.
  
  Mike

• retinoschisis
• Posted: 2009-09-21 22:03:52 By Lucia D
• My son is 9yrs old and was diagnosed with retinoschisis at Bascom Palmer (Dr. Berrocal). He tried the Trusopt drops for about 3 months but his vision didn't improve. He also reported increased burning in his eyes when the drops were applied. He was just recently started on Neptazane (oral medication). He had a follow-up with the retinal specialist after 1 month of taking the medication and his vision improved from 20/80 to 20/40 on his right eye and 20/70 on the other eye. He is still taking the medication and I'm scheduled to go back in December 2009.
  How is your son's vision now. Has he had any hemmorage or retinal detachments?
  Good luck with everything.
  
  Lucia

• Posted: 2009-10-20 19:03:44 By Waleska S
• I have to say on my son they did not work but I had a lost boy cousin that turns out also has the schisis. He does the drops and he loves them. He says he sees much better.
  
  Johanna

• did you find a dr NE
• Posted: 2010-12-08 16:42:06 By Kathleen C
• I had the same problem when I lived in Omaha, NE. I moved right after my diagnoses but my Dr at the med center wasn't even sure what he was looking at. I got genetic testing on my own. I did see a local specialist by the mall(and everyone will recommend him and his son since he is apparently the only game in town)but his idea was to put my three month old son into the hospital every three months so he could look into his eyes...not real original or practical so I never saw him again..very disappointed. I was looking at drs in Denver possibly. We are looking at starting the Dorzolamide drops after an OCT scan. My brother is 40 and did show some improvements with the drops. He lives in Houston, Tx which again has better resources. My advice is look outside NE. I hope you found a dr!

• Posted: 2011-05-24 04:35:04 By Kim L
• Thanks so much for the advise. Luckily we did find a doctor in Omaha at the Nebraska Medical Center with great knowledge if inherited retinal diseases, so we no longer travel to Iowa city. Unfortunetly the Trusopt and Azopt drops did not help my son. OCT scans actually slightly worsened with Trusopt and were unchanged with Azopt, so he was discontinued from them. I did like the Iowa City Doctor Dr Stone alot, but with my insurance through the Nebraska Med center, they werent covering anything, so after 4 trips in our first year, I finally did find a Ne med center doctor. But we are very pleased. Thanks for all your advise!

• I am looking for a retinal specialist in Omaha
• Posted: 2011-06-19 15:57:17 By Jennifer C
• I was diagnosed with RP a couple of years ago, and have been looking for a retinal specialist in Omaha also, I have been to Iowa City to see Dr. Stone, but would like to stay local to save on the cost. Who have you found at the Med. Center that specializes in retinal disease? Thanks for sharing!