Joel's Girl
Hi I was doing a search on the internet and came across this forum. My daughter is nearly 5months old and was diagnosed with CG at birth. I haven't spoken to anyone in Aostralia who has experienced this so was interested in hearing about your experiences. How is your son coming along? My daughter has had a goneotomy in her right and now trabecolotomies in both. Her Dr is Dr Tan at the Childrens Hospital in Sydney.
Lucia
Registered User
Hi ladies,
First of all I want to say what incredibly strong & dedicated mothers you are & that it is great that this support group has been started.
While I don't have a child with a vision impairment I do have retinitis pigmentosa (RP) & as I have the hereditary one it means my son has a 50% chance of getting it also. This is very scary for me, I think the worse part is not knowing if he has it or knowing how bad it will be.
Sym, I can imagine how scary it is to be told that your son is going to be legally blind by 15/16 but I did want to give you hope. I am legally blind & if I didn't tell you you wouldn't know. This is not to say that your son won't face problems & as you mentioned his syndrome is different to what I have.
I would suggest everyone contact Vision Australia they are a great resource for those with low vision, they have tactile books & can suggest all sorts of aids, if necessary start cane training etc... I have used their counselling services but as a teenager went on camps with a whole bunch of other teenagers who were both vision impaired & totally blind. We went abseiling & everything.
Just wondering how everyone is going?
Registered User
Hi NJD and other mummies with VIPs - visually impaired pups! (My mum wears a VIP badge just so everyone thinks she is important, LOL).
As I have mentioned before, my mum has Retinitis Pigmentosa. Her Grandmother and Uncle had it, and some cousins, but no one else luckily. Some days I worry so much for my son and get cold goosepimples on my skin, but other days I remember how independant and vibrant my mother is (she was told not to have kids because of the risk of passing it on, and is still living by herself at 60) and I know that he will have such a wonderful no matter what it throws at him.
There is not much else to say other than I have so much respect and admiration for those mummies doing it tougher than most, even though I know you wouldn't do it any differentl anyway. I really mean this from the bottom of my heart, well done.
Registered User
Firstly so sorry I havn't seen this post earlier.
Hamish was first diagnosed with bilateral congenital glaucoma at 4 months and had surgery at 4months and again at six months, had five different eyedrops for approx 3 months afterwards but since then his pressures have maintained themselves.
We see Dr John Grigg at his Gordon Eye Surgery but all surgeries are done at Westmead Children's Hospital. We see Dr Grigg every 12 weeks, hamish's eye pressure is tested at each visit and on every second visit they put drops in his eyes to allow them to dilate enough to do a field test of sorts to gauge the eyes developement. From what we've been told his eyes are developing at the normal rate. Originally they said he would require glasses at about 1 years old to correct his short sightedness but from the field tests they don't believe that to be necessary. Until he is old enough to communicate the results we won't truly know what / how far / how clear he can see.
We are seeing great improvements in him all the time. The glare / sunlight can still be a problem but not near as much as six months ago. We are crossing our fingers that we are one of the lucky ones that had corrective surgery early enough to prevent any longterm damage to the vision - this being said, Im more than aware that at ANY time during his life the pressure can rise again and cause damage so I know we are not out of the woods so to speak.
Happy to talk to you further and willing to provide you my email address i you wish to support each other through this.
All the best with your little one......
Cindy
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