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New here, My son has an eye disorder, is there anyone that knows anything about it?


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  #1  
August 21st, 2008, 02:23 PM
jaylaurkate's Avatar Regular
Join Date: Aug 2008
Posts: 26
My oldest has glasses. He has been wearing them since he was 3.5. We first found out that he needed glasses at a routine Pre-School check-up, he was failing miserably at the tests. The doctor was surprised that he went as long as he did, because for the first time glasses wearer, it was a strong prescription.
We moved to the Kansas City area about 2 years later, and went to see an optomitrist to get his eyes re-evaluated. She was checking...checking...checking and I knew she had something to say. She asked if it would be ok to dialate his eyes. Me being a person that has an eye disorder, knew that she would be looking deeper into something.
SO the diagnosis...PPCD...Posterior Polymorphic Corneal Dystrophy...I am still unsure about what that means and just how it affects his vision. He also has the strabismus (sp) and he is showing signs of having the disorder that I have (Keratoconus) I wasn't diagnosed untill my late teens, and my father also has the disorder. The pediatric optomitrist said it is unusual to find children with it, especially with 2 seperating issues that both affect the cornea.
Long term, I need to be on the look out for Glaucoma, if that happens, he will need a cornea transplant. If the Keratoconus gets worse, then that too would mean cornea transplant.
Since his diagnosis, I have discovered that I to have PPCD, as well as my middle child. She doesn't need glasses yet, and the optomitrist seen the youngest in April and said she looked OK so far!!

I am wondering if any of you all may have info, or better yet have a child with this disorder, most of the time I get asked why he has questions, I have learned not to tell them about the eye diseases because people just give me a look of "what did you say?!"

So hopefully there is another momma out there that has this, I know it is nothing right now, he is NOT blind, but he definetly could be going that direction.
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  #2  
September 8th, 2008, 10:06 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
I am very sorry it took me so long to get back to this. I have been out of town for 4 weeks with my dd Alexis in an intensive pediatric feeding disorders program.

Big hugs to you mama. I don't have any experience with PPCD and don't have much info myself. So I can't offer any answers to your questions. That being said, my dd is visually impaired, her optic nerves never fully developed, and she is also autistic, globally developmentally delayed, and on mutliple medications so she can grow and develop properly. So, I will always be here to offer support and act as a sounding board or whatever you need me for.

My biggest piece of advice, learn everything you can about PPCD. My dd's condition is extremely rare and not many people have even heard of it let alone know anything about it. I was uncomfortable talking about it at first, but since she is now 6, and it is obvious she is not like other children, I would much rather answer questions directly and honestly than how people whisprer, look, and point at us. This way, I can educate them and maybe next time they see a child who looks different, they might be more compassionate.
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<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
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