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

 

How to talk about your pregnancy at work

The workplace isn't always a friendly place for pregnant women. Yet working women inclined to conceal a pregnancy from prying coworkers may be better off opening up and carrying on, according to a new study.

Tell us your story to win!

To celebrate Mother's Day this year we are giving you the chance to win one of five great prizes simply by telling us your story.

Where to get help to help your baby sleep

There is so much pressure about having a baby who sleeps 'all night' , it's no wonder you worry about your baby if she wakes in the night.

Vintage baby names having a comeback

What makes some names have comebacks while others silently fade into oblivion? A few factors come into play.

When your partner doesn't want you to breastfeed

Dads can have many reasons for not wanting their partners to breastfeed their baby, but both parents should learn more about it before making a final decision.

Model mum Sarah Stage shares post-baby selfie

Most new mums would recoil at the thought, but Sarah Stage has shared a post-pregnancy selfie just four days after giving birth.

I'll admit it: I have last child parenting fatigue

If you're a new mum and feeling ignored by the older mum/the old hand/the has-been, please know, it's not you, it's me. Blame the last child parenting fatigue.

Exhaustion is not the same as tiredness

Having a new baby isn't tiring - it can be downright exhausting.

Five posterior babies, four home births

I was on a high. I'd done it all by myself with no help from anyone.

Mum's list of birthday gift demands goes viral

We're big fans of kids' birthday parties - but this is one bash we're glad we didn't get an invite to.

Kate Middleton to receive 'loyalty discount' for second birth

Everybody loves a bargain - including the Duchess of Cambridge.

Fish & chip shop owner's sad note goes viral

A lengthy note put on the window of a fish & chip shop has gone viral due to the writer's serious doubts about the romance of travel.

Pregnant women need good nutrition advice, not judgment

Pregnant women are under pressure to do all the "right things" to have a healthy child. It results in women feeling judged about their decisions.

When your child wants you to have another baby

Giving your child a sibling when you don't want to have another baby can be a complex issue.

William Tyrrell's mum speaks out: 'We hope he is still alive'

The mother of missing toddler William Tyrrell says she has a vision that somebody "picked him up and moved him on ... that's the only way ... to explain for him not to be there".

Family comes first for 23-year-old Tommy Connolly

Most 23-year-old blokes spend their hard earned cash on fun times with mates or romantic dinners with their girlfriend, but not Tommy Connolly.

Newborn all-girl quintuplets 'doing great'

The first all-female quintuplets born in the United States were delivered last week, at 28 weeks and two days.

Model mum's big baby silences critics

He may be less than a week old, but baby James Hunter has already helped his model mum silence her critics.

Jammy, Hula Hoop, Rage: Reddit reveals most unusual baby names

A recent Reddit thread has revealed some of the more creative names in the world.

Woman awakens from coma, learns she gave birth

A US woman awakened this week from a four-month-long coma that doctors had feared would be permanent and learned that she had given birth to a baby boy, according to her family.

'Give us a break': mum sent shocking letter over Facebook baby pics

Posting a lot of baby photos doesn't make you a bad person. It may make your Facebook feed a little irritating, but it doesn't make you a bad person.

In defense of the dads who do so much

It's time to shift the focus off what dads aren’t doing and shine it on what they are.

The modern cloth nappies too cute to cover up

If you're only just joining the modern cloth nappy movement, or would like to spruce up your collection, we have to introduce you to Designer Bums.

How breastfeeding can affect your libido

When you’ve just had a baby, having sex isn’t usually top priority. In fact, for a lot of women it rates about as appealing as changing another dirty nappy.

Should pregnant women be allowed to use 'parent and child' car parking spots?

Is it acceptable to use these car parking spots when pregnant? How many of us would admit to doing it?

Healthy baby from sperm taken 48 hours after a man died

Fertility doctors have described their "most extraordinary case" - creating a healthy baby from sperm taken 48 hours after a man had died.

Sign up to our 30 days of #PlayIQ challenge

Sign up to receive 30 amazing tips and ideas for play with baby during the month of April and submit a picture or tip on our social wall for a chance to win an amazing Fisher-Price prize pack.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Last chance to win a year's supply of toys

You have less than a week left to win your child one of five Fisher-Price toy packs valued at over $600 each - hurry, enter today!

Childcare is a big problem, but there's more to it

Let’s keep talking about these issues and not allow them to be put into a neat little box that’s labelled ‘Fix childcare and everything is solved’.

Pink's awesome response to body-shaming trolls

When trolls felt the need to comment on 35-year-old singer-songwriter Pink's weight, her answer was an awesome ode to body love.

Fertility clinic offers egg donors $5000

A national chain of fertility clinics is offering egg donors a $5000 payment to cover their expenses, a first for Australia which is raising concerns the money could act as an inducement.

Baby boy abandoned in India amid fresh surrogacy concerns

Australian officials could do nothing to stop an Australian couple from abandoning their baby son, born through surrogacy in India, after they decided they did not want to bring him to Australia.

Herd immunity and community responsibility: how free-riders can make kids suffer

Individual choice works for haircuts and handbags, but not for preventing infectious diseases that kill kids.

Photographer captures 'unexpected beauty' of birth

If there is one thing Leilani Rogers knows about childbirth, it is that no two deliveries are ever the same.

Expectations vs the reality of making a toddler's clothes

Note to self: less sewing, more life. Not the party dress, but the party. The toddler, as usual, has it all figured out.

Mum meets 'dead' daughter 49 years after birth

In 1965, Zella Jackson-Price was told her premature baby girl had died shortly after birth.

How pregnancy probiotics can help you and your baby

New research suggests that taking specific pregnancy probiotics could be the answer to a range of common pregnancy side effects.

53 creative pregnancy announcements

Announcing that you're expecting can be a time to express your creativity, sense of humour and imagination. Check out how other parents and parents-to-be have broken the news to friends and family.

IKEA hacks for the nursery and kids' rooms

Are you one of those that know the whole IKEA catalogue by heart? Love their stuff but want to personalise it? Here's some inspiration to help you realise the potential of IKEA furniture and fittings.

36 baby names inspired by food and drinks

A French court may have ruled out Nutella as a baby name, but that doesn't have to stop you from taking inspiration from the supermarket (or bottle shop). See what parents in the US have chosen for their delicious little ones.

 

ENTER NOW!

Win a year's worth of toys

Last week to submit a picture of your baby at play for your chance to win. Visit the Play Wall to view our recent entries.

 
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.