Baby V – Stickler Syndrome

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Baby V had crazy eyes as many newborns do.  The difference was that her eyes didn’t fully straighten out by 3 months of age.  She had alternating eye turns, especially noticeable in photos that I had taken of her.  Since we were concerned, we had her examined by a pediatric optometrist at 3 1/2 months.

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I went into the appointment fully convinced that it was something that would correct itself with time.  I remember the doctor telling me that if she finds a prescription greater than a 4 we would have to correct her vision with glasses or contacts.  As the exam went on, it was obvious to me that there was a problem.

Baby V’s eye turn was a result of a huge myopic prescription, -15.  She came home with contacts in her eyes.  The adjustment was rough for her.  She actually avoided looking around for days and she preferred just to be snuggled up, face in, on my shoulder.  It took time, but eventually baby V looked around and discovered the world around her.  With time, we switched to glasses for convenience.

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Over the next few months and a few more doctors appointments, we learned she has Sticklers Syndrome.  For her, that diagnosis basically means she is at high risk for a retinal detachment.  We do weekly checks to make sure she is using both eyes.  She has regular appointments with an pediatric ophthalmologist and an optometrist, who ironically is her daddy, my husband.

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We feel very lucky that our baby V is never very far from great eye care!  She’s 18 months now.  Everything looks healthy, she is well adjusted to wearing glasses, and she is conquering the developmental delays due to her vision.  Glasses are a part of her life and will be forever.  I can’t really even imagine my sweet baby V without them

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3 Comments

  • Beth says:

    Thanks for sharing! Our lil’ E also has Sticklers. His Dad and Uncle both have been diagnosed since they were kids. I was in a bit of denial when E was also diagnosed with Sticklers and given a rx of -15 as well. What awesome kids we have to overcome this slightly obscure syndrome!

  • Toshia Hansen says:

    Hi,
    my son is now 3 years old and has Stickler Syndrome also. he was doing well with contacts but now it is having problems with it. I was wondering in your opinion what glasses I should get? since he has a bug eyes and no bridge of his nose none of them seem to work correctly let alone be comfortable for him. any advice could help.
    thank you so much
    Toshia

  • Jennifer says:

    My daughter, 3, was just diagnosed with Stickler’s. I’m very concerned about her eyes especially since she plays rough and is in preschool. Do any parents out there know much about goggles for playground use? I am contacting her district this week and getting her on a 504 plan so the district can send a vision specialist out to consult with her teacher. Any info would be helpful!

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