Update (Beth)

Rebecca is doing quite well.  Unfortunately her Physical Therapist was in a car accident just after Thanksgiving, so Rebecca hasn’t had PT in quite a while.  We’ll be starting weekly PT
up at Children’s Hospital next week until her regular PT from Early Intervention is back.  As I previously posted, Rebecca has CME (cystoid macular edema) which is cysts filled with fluid in her eyes.  We have been told it is quite shocking that Rebecca has this at such a young age.  It blurs the central vision.  We are giving Rebecca eye drops now to hopefully dry up some of the fluid.  Rebecca absolutely hates them!!  She pushes us away, and clenches her eyes shut as tight as she can.  20170105_102300We have to give them to her twice a day in both eyes.  The possible side effects include head aches, light sensitivity, and a brief stinging in the eyes.  We’ve been told that they are not a magic drop and that they don’t work at all for some people, and that sometimes they may work for a couple months and then stop
working all together, but sometimes they work.  We are hoping that they work for Rebecca, but we are also hoping that she is tested soon to see if they are making a difference because if not, I want to stop torturing her with the drops.  I’ve put a call into Children’s Hospital to find out when we will have another test and am waiting for a call back.  Rebecca is such a happy little girl. She is lucky to have such a great big sister, Reagan is just amazing with her, she’ll play with Rebecca for hours.  Rebecca now can usually be found playing with her play-kitchen.  She loves opening and closing the cabinets and taking out the food and pots and pans.  We are anxiously waiting now for
January 10th!!!!  Just a few days now and Rebecca will hear for the very first time!

2 comments

  1. Sara Needham · · Reply

    I came across your blog on the Usher Syndrome Coalition page. Our 7 year old son, Andrew, has Usher 1D. He has also struggled with cystoid macular edema. He uses Azopt drops and they seem to help some. Is your daughter also using Azopt?

    Like

    1. Hi Sara thanks for reaching out our daughter is currently on dorzolamide which was recommended by the ophthalmologist. How old was he when he was diagnosed
      with the macular edema?

      Like

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