[trebambinibelli]

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.

[jussy6]

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.



This post has been edited by Therese: 12/11/2012, 06:43 PM

[trebambinibelli]

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.

[jussy6]

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.

This post has been edited by Therese: 12/11/2012, 06:44 PM

[Therese]

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

[jussy6]

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.

[creepersgonnacre...]

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!

This post has been edited by IAmCal: 12/11/2012, 07:49 PM

[trebambinibelli]

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.