Blind/Visually Impaired Support Group for kids

[Sym]

It's so hard sometimes.

I just heard from the childrens hopspital and they are in the process of admitting Bryce for an MRI and some other test where he goes under a general and they flash lights into his eyes to see how his brain reacts to it. (cant remember what she called it, I'll google search later). I just really hope they have his diagnosis wrong and he won't lose his sight.

Never heard of PHPV, if you have other children are they at risk of being born with it aswell?

Hopefully all goes well for Caitlan when she has her operation. I think Girls are tough and little fighters!

[caitlansmum]

PHPV is that in the third trimester there is a blood vessel in the eyes which are suppose to disappear, caitlans hasnt in the left eye which makes her blind.

I hope everything goes well for your little man, its scary to go through all that we do we always wonder about the future for our little ones.

Good luck

Hayley

[sams_mum]

hi all we have had probs with sam from the start- he had a platlette disorder (now resolved) and a porencephalic ('hole in the brain') cyst was found in his right temoral lobe. was diagnosed with visual delay @ 3 months- wasnt tracking at all; he is now but not as wel as he should be- he is now 6 months. he had his 2nd MRI last week under general anesthetic to review the cyst and check his optic nerves, still waiting to hear results. also has nystagmis(sp?) (roaming) that hell probly have all his life.
we saw the ophthamoligist and we were told to start patching- when he does focus one of his eyes will turn in- not a dominant eye yet.

[caitlansmum]

how is everyone going, has anyone got any results back yet????

Have our surgery date for Caitlan 5th November, going to melbourne again in june to see the surgeon and then going over to melbourne in november for the operation.

All is ok here at the moment

Hayley

[joel's girl]

Hi ladies,

Sorry to be meeting you all under such circumstances.

My son was diagonsed with bilateral congential glaucoma at the age of four months. He has had surgery on both eyes in the past two months hence my relief and excitement when I found this thread.

What we are being told so far is that it is a life long condition that will require regular monitoring by his op in sydney. His sight has already been damaged but to what extent we will not know till his reaches age 4 or 5 !! I think that's the hardest thing to deal with - the wait to see how good or bad things are going to be. At the moment he can see for 3 - 4 metres ( he is 7.5 months) and will get glasses within the next 6 months. After the test the op stated that his sight may improve as his eye develops but it may also get worse.

He looks so perfect and everyone comments on what big beautiful eyes he has - yet that is due to the glaucoma and what is causing all the drama so it's hard to take the comments as a compliment IYKWIM.

Looking to chatting and venting with you ladies.

Hey Sams Mum we are also in Newcastle - small world hey !

[sams_mum]

hi all i hope everyone is going ok.
catlins mum good luck with everything i hope catlins going well.
Wow joels girl you sound like youve had some tough timesthe wait and see line has lost all meaning it gets really frustrating. where in newy are you- sams 2 days younger then your LO!! makes the world even smller lol
i know sams condition isnt as severe as some of yours, but i can relate- strangers commenting on how beautiful your bub is only to give a weird kinda look- a mix of pity and relief its not them-when they ask why his eyes are shaking and he wont look directly at them(nystagmus) - sam does seem to be getting a little better though, as to what he can see and how far we have to wait until he can talk and tell us!!
We recieved the results for the MRI and they cant link the eye problems to the cyst which is fantastic and the cyst hasnt gotten any bigger
still doing the patching sam hates it!!
have a follow up with the opthamologist in june and neorologist in oct.
wish everyone good luck and good nite

[joel's girl]

Hello ladies,

How is everyone ?

Sams_mum: Newie is too small your right. We just moved to Adamstown Heights. How funny that our boys are so close in age. We had Mish at Ncle Private, don't tell me we were in hospital at the same time as well. Too funny !!

Quick update on us. Mish's left eye seems to be showing signs of glaucoma again (only operated on 5 weeks ago) so perhaps I should call the OP and bring our appt forward as we are not due to see him til 25th June ???

Just a thought: Does anyone here use the services of Vision Australia ? I've been told that they have a 'low vision' service to help bubs / children starting from the age of 1. Just interested to hear of any experiences.

[Mum2Princess']

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

[kelebek]

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?

[joel's girl]

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

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