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.
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
At just 37 years of age, with two young sons, Vicki was diagnosed with inflammatory breast cancer. Now her family wants all women to know the symptoms.
Pregnancy and birth is an intriguing process no matter where you are in the world. One soon-to-be father gleans wisdom from a new guide.
It’s not surprising that IVF is often seen as a negative journey towards the ultimate positive, but having a glass-half-full approach can make a big difference to the experience.
A mum explains why she and her husband are choosing to gift their leftover embryos to help strangers achieve their dream of parenthood.
Just as every baby is unique, so is every pregnancy. And that means morning sickness can vary a lot, too.
Why is it that the word ‘mumsy’ has connotations of such a negative nature – but seems to be the only other option apart from ‘yummy’?
As the waiting game of late pregnancy continues, this mum considers a few things that might hurry things up a little.
It has been a little over a month since William Tyrell disappeared from his grandmother's home, 33 long sleepless nights for his family as they mourn the absence of their cheeky young boy.
Babies born in the summer are much more likely to suffer from mood swings when they grow up, while those born in the winter are less likely to become irritable adults, scientists claim.
Suddenly single with a baby and an 11-year-old son, Tara O?Connell developed an app to improve the lives of mothers who were similarly overwhelmed.
As soon as your baby enters the world, everything else takes a back seat - even the necessities of daily life such as eating are severely compromised, right when you need energy the most.
The Live Lighter campaign will take people inside the human body to show the internal dangers of being overweight.
A new mum's first month of motherhood didn't pan out as expected when she lost a family member weeks after her baby's birth.
Facebook and Apple are hoping to provide women with the freedom to build their careers without the added pressure of having children at or by a certain age.
The idea of making a 'pregnancy contract' with your partner may sound a bit silly at first, but it can help make the transition to parenthood a lot smoother.
Burping babies vs burpees – yes, new mums and personal trainers live in different worlds. But they can work together - once you find the right match for you and your lifestyle.
Police say that an incident in which a man pulled on a woman?s pram while walking a popular Sydney route late last month was a misunderstanding.
Three weeks ago, my auntie, a midwife, developed a fever. Sitting here in Sydney basked in Australian sunshine, that shouldn't be big news.
One mum shares her frightening experience and vows to never take her health for granted again.
Got bored kids? Quickly find the best activities for kids wherever you are in Australia with the Essential Kids app.
Top 5 Articles
Capture life more easily with the Canon Powershot D30. Shockproof, waterproof and dustproof, you can take it almost anywhere and shoot beautiful images, time after time. Enter now!
I am five years into this parenting gig and I’ve learnt that sleepless nights and changing dirty nappies are child’s play.
It's nice to celebrate a child making the shift from nappies to 'big kid' undies, but do we really need a semi-realistic used toilet cake to do it? Here are some of the best and worst cakes parents have used at 'potty parties' around the world.
Plan ahead - and do it now - to ensure festive season expenses don't break the bank.
A sequel is coming soon to the 2011 hit book 'Go the F*** to Sleep' - and this time, it's about mealtimes.
Handmade crafts to decorate and personalise your child's next birthday - from banners to cake decorations, we've got gorgeous party finds from Etsy.
Creative and practical storage ideas for the kids' toys and books can also add some stylish decor to your home. Visit babyology.com.au for more stylish modern finds for hip kids & parents.
I have a chronic illness nobody likes to discuss, as it involves toilet talk. But it needs to be talked about.
Maybe the mum I saw in that waiting room, seemingly disconnected from her baby, doesn’t have the support she needs.
Starting a family doesn't always mean moving into a bigger house - not yet, anyway.
What's in a name?
Looking for a classic name, or an unusual name? Our Baby Name Finder is for you, search or browse to refine your shortlist.