Alayna's eye appointment

Alayna had her eye doctor's appointment today, and we got a bit of distressing news. Mostly distressing for ME, the crazy one. Her optical nerve in her left eye has an abnormal shape, this could be totally normal, or it could potentially be an early symptom of glaucoma. She also has "speckles" on her lens in her left eye, again this could be total normal OR it could be the first stage of caratracts. Both are VERY common with her disorder :( We're working on getting her old records from the Seattle area so that her new doctor can look at them and determine if these are new developments or not. The doctor seems to feel that it's just the way her eye was made, but I can't help thinking about the worst case scenario. The plus side is that the pressure in both eyes are the same, so if it IS somehow early glaucoma it's VERY early.

If they are new, then it means that Alayna's vision, at least in her left eye, could be at risk. The caratracts aren't as worrisome, as they can be removed. However, the glaucoma is VERY worrisome as there are child with her disorder who have had to have their eyes removed due to really bad glaucoma.

As well, we also found out that her corneal transplants could fail/reject at any time. Any time she gets sick and is fighting off germs she's at a higher risk of also rejecting the corneas. However, she can always have another corneal transplant to save her vision. The doctor's mother-in-law had corneal transplants and they failed after 20 years, thankfully she was able to get another transplant. They also have implants (made-man corneas) that generally have a more successful rate of success.


This is some pretty scary stuff!! The wonders and what ifs about it all. There have been kids with Peter's Plus syndrome who have had severe glaucoma to the point that they've lost their eyes completely.


Alayna's vision in her left eye with her current glasses on is 20/50  compared to 20/30 in her right eye. There are a couple of things we can do  to help with that. First, they generally see better results with contacts as opposed to glasses so we're going to try that (we'll see how Alayna does with contacts). If that doesn't work we can get her a stronger prescription. Also, we're going to patch her right eye for 2 hours a day to "teach" the left eye to be more dominate.

Alayna goes back in to see her eye doctor in January, so we'll see what she says then.

Here is some information regarding Peter's Anomaly, http://emedicine.medscape.com/article/1200372-overview#showall Peter's plus is Peter's Anomaly PLUS developmental delays, short limbed dwarfism, and a few other issues. And, some information about Peter's Plus Syndrome, http://www.ncbi.nlm.nih.gov/books/NBK1464/

http://ghr.nlm.nih.gov/condition/peters-plus-syndrome