A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS

Persistent Hyperplastic Primary Vitreous

also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".


Perth, Western Australia

Thursday, September 9, 2010

The latest from today's appointment

The white "stuff" in his eye that looks like spider web is scarring but it's not on the iris as I thought, it's actually on the cornea. That means it's not on the inside of his eye, it's on the outside. The most likely cause of it is the incision from the second surgery. This is pretty good news, considering. The registrar (again we didn't see Dr Lam, we saw a new registrar called Johnaton, he was really very good) said that more than likely it won't grow across his eye, and if anything it should fade over time. Woohoo. Good news again because this means that it won't grow across the pupil, further obscuring any vision he could possibly get from his eye.

His pressure is 25 which is ok. I asked again about a conformer or some way of dealing with his eye being small but was again told it's too early and that he's been through enough and in a year or so if his eye is "cosmetically unacceptable" they will do something about it.

He still has no red reflex so the blood is still at the back of his eye. KEEP PRAYING.

All in all, I am taking it as good news. His eye is no better, but it's no worse so that's great.

We don't need to go back for another 4 months but I am actually going to book in privately to see Dr Lam for our next appointment. I don't want to see Registrars any more.

I should add that we aren't using Atropt drops anymore either. It will be interesting to see what colour his eye goes. I haven't properly seen his iris for months because the drops kept the pupil so big. Speaking of the pupil, it still looks like the number 8, like two pupils.

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