Jump to content
Centre for Eye Health Sydney
7 replies to this topic
Posted 12 November 2012 - 03:21 PM
I have posted here for traffic. My son will be seeing the CEH in Sydney. Has anyone had any experiences with them? DS has some vision loss and the optometrist suspects a degenerative retinopathy. Very nervous about it all. I'll be coming from interstate.
Posted 12 November 2012 - 03:36 PM
Hi, I can't comment on this particular place as we don't have any experience with them. I am just posting a reply as I know how stressful this can all be. DS2 has coloboma of the eyes and we also travel interstate for ongoing eye health issues. We see a Dr in Epping, Sydney. He is fantastic. It's best to go with your instincts after the appointment and get a second opinion if you feel it's needed.
Best of luck, I know we felt more reassured after learning more about our son's condition.
Edited by Therese, 12 November 2012 - 06:43 PM.
Posted 12 November 2012 - 04:35 PM
Thank jussy6 for your reply. DS is 7 and his father has a form of retinopathy and if I'm a carrier (although supposed to be unlikely) there is a 50% chance our children could inherit the disease. He is showing ambylopia - around 6/15 (so not bad but not good either - optometrist said if he was old enough to drive she probably wouldn't let him) but not able to be corrected. So far the basic retinal scans have shown nothing. We're hoping that the more advanced technology at CEH can pick up any damage/stress to the retinal cells so that we know if it is that or something else eg muscle/brain related maybe? Thank you for your specialist's name. Is he a paediatric opth? We don't have any here in the ACT.
Posted 12 November 2012 - 06:34 PM
Hi again, we are also in the A.C.T and he is a paediatric opthamologist who heads up Sydney children's hospital and also has a private clinic in Epping (where we attend). The place you are attending sounds very experienced. It's such a stressful time isn't it? I remember until we had our first appointment with that Dr we were extremely stressed, however once you have a diagnosis and knowledge of the condition at least you know the direction you are headed. Also, if you are comfortable with the doctors you also feel better equipped to handle everything that comes your way. Don't be afraid to ask LOTS of questions, no matter how simple they may seem.
Edited by Therese, 12 November 2012 - 06:44 PM.
Posted 12 November 2012 - 06:46 PM
It is against site rules to recommend or discuss doctors on the boards. I have edited a couple of posts. Please feel free to use the pm system to discuss individual doctors.
Thanks for your understanding,
Posted 12 November 2012 - 06:53 PM
So sorry. I think this is about the 3rd time I have ever posted and only did so as I can completely relate to the topic. I am more than happy to be PM'd, I guess that is someone sending a private message to my inbox? Trebambinibelli, if you read this you can send me a message and I can send you the link I posted.
Sorry again, didn't mean to break any rules.
Posted 12 November 2012 - 07:45 PM
Another with a son with retinal disease We go to the WA equivalent the Lions Eye Institute. Noah my son has damage to his retina and is legally blind in one eye and about 1/6 normal vision in the other eye. It has been a very long drawn out process trying to figure out what disease he actually has! My father and uncles have the same thing but I am fine so it is a x-linked. They are thinking one thing he has is x-linked retinoschisis and the blind eye is affected by micropthalmia. There are all kinds of different tests that they can do with different cameras and things it is amazing.
Alot of these retinal things cannot be fixed though so just prepare yourself for that and many are degenerative but having said that these kids cope so very well and adapt!
Edited by IAmCal, 12 November 2012 - 07:49 PM.
Posted 14 November 2012 - 10:13 AM
Thanks jussy6 and IAmCal for replying. If I need the name of that Dr I'll pm you jussy, I didn't realise you couldn't talk about it either, I thought it was just if you talk negatively about someone.
I appreciate your understanding about how this all feels, XH is vision impaired so I have an understanding about what it's like and how it's possible to lead a normal life with all the technology that's around. I just want to know what it is so I can move forward. The optometrist said that the tests at CEH will determine if it's a retinopathy or if it is something else. If it's not the retina I'm assuming they may be able to do something? He's been tested for glaucoma so it's not that either. The appt is less than a month away so not too long before we know.
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users
The horrific terrorist attack in Manchester, killing 22 people and injuring many others, including children, has impacted people throughout the world.
Now you can have your baby or toddler's name printed on their Bonds Zippys.
A mum has taken to Facebook to warn parents of the dangers of a popular baby monitor after her daughter sustained a burn to her foot.
Children under the age of one should not be given fruit juice, according to new advice issued by the American Academy of Pediatrics.
One of the weirdest things about your little kids getting older, I find, is when they start to be able to hold full conversations with you.
Aspirin and early detection are helping to save the lives of Australian women and babies at risk of dying from the pregnancy complication pre-eclampsia.
Some mums are left physically and emotionally depleted, with nothing left to give, long after giving birth.
A technique that effectively "unblocks" a woman's fallopian tubes by flushing them with liquid to help her conceive has been used for decades, with varying levels of success. Now a study has confirmed that the method significantly improves fertility, and that a certain type of fluid – one that is oil-based rather than water-based – shows strong results.
Chances are you've heard of body pump, but have you heard of belly pump?
It's a common problem faced by mums returning to work after an extended period of maternity leave. How do I account for the gap that years at home caring for babies has left in my resume?
Make sure you aren't eating while reading this post.
Top 5 Articles
From our network
Money might be funny in a rich man's world (or so ABBA told us), but for the rest of us it's a major consideration – particularly before having a baby.
Maternity leave is a special time for you, your partner and your new little bundle. The last thing you want is for financial worries to stand in the way of that joy.
Becoming a parent is full of surprises – not least of all finding out that, for such small beings, babies cause a lot of chaos and expense.
Here are some ideas for getting that budget in shape, ready for being a one income family.
See what names are trending this year.