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

Tuesday, October 12, 2010

Hand, foot and mouth. What next!

Poor Joel has hand, foot and mouth (also called Coxsackie Virus). He has blisters on his hands, feet and around his nose. Thankfully none are in his mouth but he does have ulcers. He is still 100% breastfed and I really think that is what is helpling to keep them from spreading to his mouth. Being constantly saturated by breastmilk is protecting him. Whenever he gets sick, his PHPV eye goes red and looks "sick". It is the first indicator to me that he is unwell. He has been waking every 2 hours at night and screaming for between 2 and 3 hours. Last night we almost took him to the hospital but then he fell asleep after an extra dose of Nurofen. I took him to the doctor today and he suggested we give him Painstop - usually recommended for kids over 1 but I am sure it's nothing compared to the drugs he's had through his system with his surgeries.

I am waiting to go back to PMH, even if I do see a Registrar. I would like to go there before Christmas so next month I will ring and make an appointment. We are seeing Dr Lam privately on the 14th January next year.

Even if he doesn't have any vision in that eye, I would still like to start looking into something to help the cosmetic appearance of the eye. He will be 1 in January so I think it's time to start looking into that.

It really does feel that his whole life so far has been spent battling illness, recovering from surgeries, visiting the hospital or having check ups at the doctors. This latest illness is just another thing he's had to deal with. I feel more like his nurse than his mum, always administering antibiotics, drops, pain relief. He's such a good little boy. He hates having drops and medicine, as soon as he sees the bottle or syringe he turns his head and makes it so hard to get anything into him. I don't even want to think of the cost of all the drops and Panadol we've wasted! He twists and turns and wriggles and is just so strong, he's such a little fighter!

Along with worrying about Joel, my mum is having a CAT scan tomorrow as the doctors have found a lesion on her lung that hasn't responded to medication. She has never smoked, lives a healthy lifestyle, doesn't drink, eats well...I am just praying it's nothing.

One of the girls from church has organised our dinner for tonight and Rich's work sent through a big box of chocolates for me. I am so blessed to have amazing people in my life and I think it's just amazing how God knows what we need before we do.


  1. Thanks for your newsy blog Tracie and let me know how your Mum goes as well. You are doing a great job as a mother and don't ever think the Panadol is a waste. Deb x

  2. Thanks Deb. She got the results back today, they need to do more blood tests to confirm exactly what's going on. It is a bit of a worry.

  3. Thanks M, hope your little boy is going ok.