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

Friday, January 28, 2011

Appointment to check up on pressure, bleeding etc

We had our appointment today to check up on how his eye is going with the drops. It definitely looks better and Dr Lam had a really good look in there and took the pressure and everything is great. Pressure is normal, ulcer is pretty much gone, bleeding seems to have calmed down a bit and the redness is gone. He's not rubbing it as much as he was before either.

Something I learned today - for all the parents putting drops in their kids eyes, Dr Lam said that even though they may rub their eyes after putting the drops in, the drops are designed to be absorbed fairly quickly so even if it seems like not much is getting in there, it is, and just rest assured they should be doing their job.

We have to go back again in 3 weeks for another check up then after that we are all set to get his shell. Very exciting.

Sunday, January 23, 2011

His eye is getting better

The drops are definitely working, the redness has gone down heaps and he's stopped rubbing it.

I've just added some more pictures of him today.

Thursday, January 13, 2011

Our last appointment with the surgeon today

I've just come home from our last appointment with Joel's Opthamologist. This is the private appointment I have been waiting for for the last 3 months.

Joel's eye has been red and swollen shut for 3 days, I've taken him to the GP and they prescribed Chlorsig (which I never filled because I know it's not an infection). It was amazing timing that this week has been a particularly "bad eye week", I will upload some photos when he wakes up but it is very similar to the pics I took in September. Today, the surgeon had a really good look in his eye (well as good a look as you can get with a squirming one year old - that's right - he's 1! Yesterday was his birthday, his party is tomorrow). I had to hold his arms across his chest and his head squashed into my body while Dr Lam used the magnifier to look right into his eye, all the while Joel just scream and screams. The screaming doesn't upset me anymore, it's something that has to be done and it is for his benefit to get as good a look into that eye as possible. His last operation was to drain the hyphema (blood filled eye) but it looks like his eye has heamorraged again and is full of blood once more. This is causing the pressure to rise and he is contantly rubbing it and it weeps. A lot. We have him outside by the pool with us and 10 minutes later his eye is tearing up and weeping. It is just so light sensitive. Dr Lam agreed Chlorsig wouldn't help and has prescribed us some steroid drops for the eye, so I will start him on those 4 times a day.

I did speak to Dr Lam about the prosthetic and he was extremely helpful. He is pleased that we have come through his private rooms as it takes the pressure off the public system. I am really disappointed in myself for not doing it before. Dr Lam has said that if Geelen (ocularists who will make Joel's new eye) can't get a good, proper mould of the eye that he (Dr Lam) is happy to do an EUA (Examination under Anethesia) to get a perfect mould of the eye and also test the pressure. This will give Dr Lam a chance to have a proper look, to really see what is going on with the eye, so that any indicators of it having to be removed down the track can be identified. His pressure today was very high, but Dr Lam puts a portion of that high figure down to Joel screaming and resisting while we were holding him trying to get a good reading.

This is a great blog about a lady whose 4 year old son has what Joel has, his eye was removed today:


So, all in all, a good outcome. I am pleased that I know he has more heamoragging and that we can treat it and make him more comfortable. It still breaks my heart that he goes through all of this, I always wonder what would have happened if we never did the surgery on him, but what's done is done and I know that as his mum Idid do what I really thought was the best thing for him. I am happy that Dr Lam has offered to do the EUA, he has also said that we should go straight for the glass eye and not try to paint over Joel's old contact lens. I just need to make the appointment with Geelen and get that happening. Dr Lam wants to see us in 2 weeks, our next appointment is Friday 28th January.

Thanks for reading and caring about Joel. He took his first step in Dr Lam's office this morning too :-)