My corrected vision is 20/300 and I have glaucoma as well but you would never know it. I am as active as any other 7 year old that I know.
PHPV to begin with stands for PERSISTENT HYPERPLASTIC PRIMARY VITREOUS
To explain PHPV in simple terms...
When babies are developing in the womb, the eyes are one of the first things
to develop. The lens is formed when a blood vessel from the retina travels
through the center of the eye to the site where the lens sits. This vessel
is called the hyaloid artery. After the lens is fully developed this vessel
degenerates. It starts from the center; travels back to the retina and
forward to the lens. In normal eyes all that remains is a canal where that
vessel was. With PHPV this is not the case. The blood vessel remains either
in part or the whole. This is how anterior and/or posterior involvement
occurs.
Anterior is at the front of the eye so it affects the lens. Posterior is at
the back of the eye so it affects the retina. Anterior, on its own, is not
as severe because once a new lens (contact or IOL) is in place images can
focus on the retina. The retina would be like the film in a camera. In
posterior PHPV the retina usually has some damage. If you think in camera
terms, a damaged film. The "pictures" the brain gets are therefore distorted
or not as we would see them. I have both ant. and post. PHPV....... cataract on the lens and scarring on the
retina. My stalk is still in my eye. My cataract was removed but the
stalk was left. I was told this was so no bleeding would occur. (The stalk
is a remnant of that blood vessel that developed in utero). PHPV occurs 90%
of the time in one eye only, in full term normal infants. There is NO KNOWN CAUSE (so don't beat yourself up). Some of the time the affected eye is smaller (microphthalmos). The usual course of treatment (from my experience) is to remove the lens because of a cataract. After the eye has
healed, most kids are fitted with a contact lens. This can be a very
traumatic time for parents because THEY are the ones putting the lens in and
taking it out. After that the patching treatment begins. The good eye is
patched so the weaker eye has to work. This gives the brain opportunity to use and learn from the weaker eye. It also gives the muscles a chance to become stronger. One of the complications of PHPV is glaucoma. From what we Mommy has learned, the chance for that is 30% - 40%. I did develop glaucoma (1998)but we can manage it with eye drops.
I have been dealing with PHPV for almost 6 1/2 years now. At first it is very
overwhelming but over time the lens, patch, drops etc, become part of the
normal routine. I still has my moments of being stubborn (hiding glasses) but I think a lot of it is normal boy things.I was diagnosed with glaucoma when I was 3 1/2. We were in for a check
up and found that my pressures were high. (36) I am currently on cosopt
twice a day to manage the pressures and it is working well. (The pressure
now is 18)
About the patching.....
It was a difficult decision to not patch any more. Mommy didn't start the
patching regime until I was 10 months old. (Surgery at 8 1/2 months,
lens at 9+ months, patching after that) While I was 10 months to age 2 1/2,
I was at a great sitter. Her son had strabismus as a child so she knew all about patching. Unfortunately, she was unable to sit for us (me and my big brother)anymore. The
next sitter we were at did not watch me as closely as I needed to be
watched, so, I did more peeking from around my patch than not. By this
time Mommy was home on maternity leave with boy #3. It was battle royal every day.
When I was 4 I started school 1/2 days. Mom and Dad decided that they would rather I
have a positive school experience than fighting with the teachers over wearing a
patch. I did wear his patch in the afternoons for a while. They tried every
thing they could think of to get me to wear my patch i.e.. rewards when it
was on, punishment when it was off, stickers, explanations (crazy glue was
going to be Mommy's final option. LOL) Nothing worked for me. I am a stubborn boy.The patch would
come off as fast as they could put it on. I would cry and say "I can't see
very well, Mommy." It was enough to break her heart. Every time we would
see one of the eye guys, Mommy would feel so guilty that we weren't patching as
much as we should. I do have usable vision; limited, but useable if I
ever , God forbid, needed it. I can look you in the eye, tell you why I
need the drops, glasses, patch etc. and do the very opposite.
This summer (2001), Mom noticed that I was not paying attention when she called me. It turned out that I had thick fluid behind my eardrums that was preventing me from hearing properly. My hearing was down almost 50% in both ears. In July, I had tubes put in my ears. I can hear just fine now, but I still don't come when I am called. 2002 I also have to wear a retainer. My molars are coming in crooked and not leaving enough space for the permanent teeth to come in. Every 4 days Mom moves a dial that is slowly moving my teeth back where they belong. Not only do I have to look after my glasses and mt contact lens, but my retainer too! What is a kid to do!! My Mom always talks to my teacher at the beginning of the year. The teacher and my Mom are always asking my where my glasses and retainer are. I also have to wear sports goggles when I play games with balls. Everyone at school helps remind me to put them on. 2003/04 I am in Grade 4 and have made the under 10 rep team in soccer. It is the "B" team, but I don't care. I love to play soccer. My hearing is better now. The tubes are out and I can hear just fine. Now I just ignore Mom. 2004/05 I am in Grade 5 now. This year I am in the oldest class at school so I graduate in June/05. I made the school soccer team this year. It was fun! My Mom wrote an article about my PHPV in 2003 and had it published. This year she won an award for it!! I am so proud of my Mom.