Jump to content

Centre for Eye Health Sydney


  • Please log in to reply
7 replies to this topic

#1 trebambinibelli

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.

#2 jussy6

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.


#3 trebambinibelli

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.

#4 jussy6

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.

Justine.

Edited by Therese, 12 November 2012 - 06:44 PM.


#5 Therese

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,

Therese

#6 jussy6

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.

#7 whydoibother

Posted 12 November 2012 - 07:45 PM

Another with a son with retinal disease original.gif 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.


#8 trebambinibelli

Posted 14 November 2012 - 10:13 AM

Hi again

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

 

What you need to know about ovulation tests

Most people who are trying to get pregnant know that the best time to conceive is in the few days after ovulation.

Surviving a miscarriage at sea

A cruise with your family is among the most absurd settings for a miscarriage, but it is certainly not the worst.

Mum of three denied tubal ligation because she's 'too young'

A 22-year-old woman who is pregnant with her third child has had her requests for a tubal ligation denied because doctors believe she is too young.

Slapped cheek syndrome a danger for pregnant women

When a pregnant woman is infected, the likelihood that her foetus will be infected is about 50 per cent.

The signs and symptoms of ovulation

If you're hoping to conceive, one of the most important things you need to know about is ovulation.

We all know 'mum guilt' - but what about 'dad guilt'?

I remember the first time I felt mum guilt, within days of having my first child. The feeling was so intense I rang my own mum to debrief, hoping she'd tell me I wouldn't feel this way very often.

Kristen Bell urges mums to be their own superhero

When it comes to motherhood, actress Kristen Bell is her own superhero and she thinks other mums should be too.

Pram review: GB Pockit travel stroller

In a world of ever-shrinking gadgets, it's no surprise prams are getting smaller. We put the record-holding GB Pockit through its paces.

The beautiful Bombol Bouncer is back

The gorgeous Bombol Bouncer is back - and boasts two chic new colours to boot.

Gadgets and accessories for wine lovers

Looking for a gift for the wine lover in your life - or just something for yourself?

Free ticket offer

Pinky Mckay joins us again at the Essential Baby & Toddler Show presented by Blackmores with her expert baby settling advice. Register now for your free ticket.

The adventure doesn't have to stop: here's how to travel with baby

The best part about our outdoor adventures? It makes my husband and I better parents, since we're happier while adventuring.

Woman crashes car to save mum and baby's life

A good samaritan saved a mother and baby from being seriously injured by crashing her own car into theirs.

Should you tell your boss about your postnatal depression?

Returning to work after having a baby can be daunting, and when you're experiencing postnatal depression or anxiety it can seem even more overwhelming.

TV noise can slow toddler word learning, study finds

Background noise from the radio or TV might be making it harder for your toddler to learn learn new words.

Teresa Palmer on her molar pregnancy and 'unsexy' conception

Teresa Palmer is basking in pregnancy glow as she awaits the arrival of her new baby.

 
Advertisement
 

Top 5 Articles

Advertisement
 
 
 

What's hot on EB

Why drinking water can be deadly for babies

H2O is one of the necessities of life, but for babies a seemingly harmless amount of water can be fatal.

5 ways having a baby is different when you have older children

So much parenting advice is geared towards having your first baby, but what's it like having a baby when you already have children?

You can now make your own plush Falkor

Fans of The NeverEnding Story – of which there are certainly plenty – went crazy for these plush Falkors when they first went on sale last year.

Baby steps

10 things that will actually happen after having a baby

I thought I had prepared myself for motherhood. Then my baby girl arrived and knocked everything flat.

Having a baby: expectations vs reality

People love to warn you about what to expect when having a baby, but they can be way off when it comes to the reality.

Are we having fun yet? Thinking positively as a parent

Motherhood is wonderful ... except when it sucks.

The adorable smile of a baby seeing his mum clearly for the first time

There is no doubt seeing their child smile for the first time is an unforgettable moment for parents everywhere.

When breastfeeding doesn't go with the flow

Breast is best, except when it's not. And in our case, it most definitely wasn't.

'If you don't vaccinate your kids you're a bloody idiot'

The photos are heartbreaking and almost too difficult to look at, but Kayley Burke is begging other parents to take notice.

Why pregnant women should eat chocolate

In news that will make expectant mums jump for joy - and reach for a block of Cadbury - scientists have revealed chocolate could provide health benefits during pregnancy.

The baby born with an incredible head of hair

If you're in any way challenged in the follicle department, prepare to feel a jolt of envy - at a two-month-old baby.

The push for Medicare to fund lactation consultants

While meeting with a lactation consultant can make an enormous difference to a new mother, it's not a service that is available through the public health system.

Parents, this is how to cut grapes to avoid choking

One mum has learnt a harrowing lesson about the best way to cut grapes to make it safe for toddlers and little kids to eat.

Three truths about C-section mums

Lately I've been thinking about the caesarean stories and the brave women who birth their children with strength and beauty.

Help! My baby will only sleep in my arms

It's stressful to be the one who is holding your baby most of the day, but it's even more stressful to wonder, 'am I doing something wrong? Or am I creating bad habits?'

 

Free ticket offer

Essential Baby & Toddler Show - Sydney

The Essential Baby & Toddler Show, presented by Blackmores, will be held in Sydney on 23-25 September. Register for your free ticket now to save $20!

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.