Blind/Visually Impaired Support Group for kids

[caitlansmum]

Hi i am new here but was told that i should start a thread where mothers (like myself) have blind or visually impaired children.

My little girl is blind in one eye (PHPV) and is visually impaired in the other, plus respiratory problems.

Would like to start up a support group for all you other mothers out there who too have children like my little Caitlan.

Would be great to talk with you

Hayley

[Sym]

Hi Hayley,

Not sure how old Caitlin is but my little man is 2 years old and currently being monitored for possible Retina Pigmentosa. He will need to see his Opthalmologist at least once a year, he may have a syndrome that causes tunnel vision that proceeds to complete blindness by age 8 (average). The specialists are now deciding between 2 different syndromes and we are awaiting further tests.

Does your little daughter have a syndrome/condition that causes the vision loss?

It's so horrible to know that your children may become completely blind in the future. I was talking with someone about it the other day and his thought was "if you were born with sight then slowly lost it, at least when it was completely gone you would still have memories of what things looked like when others would talk about it".. does that make any sense to you?

Hope all is as well as it can be with your daughter.

[caitlansmum]

It is pretty hard to deal with something like this or with any disability really. Especially when you are watching your child go through it.

Caitlan has a condition called PHPV (persistent Hyperplastic primary vitreous) she was born with it which she is blind in that eye she also has micro eye and leukoria in that eye, in the other eye she has nystagmus, which she also has a major head tilt which at the end of the year she will have eye surgery to move her muscles in the nystagmus eye so that her head tilt will hopefully go, otherwise all her right side of her face and neck will loose all muscle tone.

They can not do anything for her site at all

Hayley

[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.

[Dragonbub]

Hey Sym
Not really the place to post this comment, but thought I would share anyway. My mum as RP and still has vision at 60. She gave up her licence about 13 years ago, but still lives independently and until recently worked as a tour guide! Her paternal grandmother also had it and it was obviously passed down genetically - something for us to worry about until Caden is old enough to test. My nanna said she saw problems with mum's eyesight when she was around 5 and got her eyes tested. She was told she would be blind before adulthood and not to have children! Luckily times have changed and there is so much support out there.

I once met a girl who couldn't walk and was blind. She had just completed her TEE and was planning on studying psychology. she was taking a break to go sailing with friends! There is so much out there for them and they can live a perfect life like anyone else.

Joels Girl - it is great that your fella has beautiful eyes. They are still the window to the soul

[joel's girl]

Its a bit quiet in here....

How is everyone going ? Would love to chat more on this thread if others are interested.

[caitlansmum]

hi, would be good to talk more, i have just had an operation myself so thats why i have not been inhere for a while now, we are off to melbourne on Wednesday for Caitlans second surgeons appointment and then surgery is now booked for 4th november which it will be good wont help her eye sight but will help her head tilt and her muscles in her face and neck

How is everyone going>>

Hayley

[Dragonbub]

Caitlansmum - I hope the surgeons appointment went well? November seems so far away, I can't imagine how you must be feeling with that looming in the future.

I don't strictly speaking have a baby with visual impairment, but as I mentioned, my mum is almost blind with a genetic eyesight disorder, so I feel it is appropriate for me to hang out in here a bit. I will need to get Caden tested in teh future and it scares me to death the thought of him having it.

My thoughts are with you all.

[Sym]

Dragonbub: Thanks for the info, it's nice knowing that people can and do live with RP. I really hope little Caden has no troubles later in life.

Caitlansmum: How are things going with Caitlan?

Joels Girl: How did everything go with Mish's appt, if you don't mind me asking? I hate to sound ignorant but I thought Glacouma only affected older people, just goes to show how many different things can and do go wrong with children. So sad sometimes when I think about it all. I haven't used Vision Australia services purely because Bryce's sight is good for the moment, do they have info on their website that might be helpful to you?

Bryce was due to have Electrophysiology (lights flashed into his eyes while sedated) last Friday but he had diarrohea on the day and they wouldn't admit him into the hospital ward. We have been rebooked in for the 2nd July so as long as he's well on the day they will do the procedure. Can't wait because then we will be more certain of which Syndrome he has.

Hope everyone is having a good week!

[joel's girl]

Sym - Our appointment was postponed til 11th July so we are still waiting. Thanks for asking. We get that comment alot about glaucoma being an elderly disease. The congential type is differnt in its cause but the affects / damage is the same as elderly suffers.

Good Luck with Byrce's procedure on the 2nd. Let us know how things go when you get a chance.

Dragonbub - Thanks for the support.....i really appreciate it.

Caitlinsmum - How did the appointment go ? Let's hope November comes around quick !

We have seen some improvement with hamish's sight - at least we think so. I will be interested to see what the dr has to say on the 11/7. We are looking into traditional chinese medicine as an alternative treatment to balance the fluid pressure within Hamish's body in the hope that it may assist with keeping the pressure even. Im open to anything that will help.

Got to go - the boys awake.......talk soon ladies.

[Tathagres]

Hi Caitlinsmum,

I have a son, Thomas, with phpv and micorphlamia in his right eye. Thomas is now 8 years old, and doing so well, people forget he is blind in one eye.

We live in Melbourne and go to the Royal Children's for his annual eye check-ups. He is supposed to wear a scleral shell over his eye, to stretch the socket but he refuses, so I haven't been too successful with that.

I would be appy to talk more with you, if you need. Also there is a great yahoo goup for phpv (search under health ).

I'm not sure how old Caitlin is, but I remember Tom had a head tilt before he started crawling - once he could move it disappoeared. The reason they develop it is, it gives them a wider view of the world. Close one eye and look around, then tilt your head and you'll see what I mean! Babies are so clever!!!

Good luck with the surgery and take care

Sophie.

[Tathagres]

Hi Caitlinsmum,

I have a son, Thomas, with phpv and micorphlamia in his right eye. Thomas is now 8 years old, and doing so well, people forget he is blind in one eye.

We live in Melbourne and go to the Royal Children's for his annual eye check-ups. He is supposed to wear a scleral shell over his eye, to stretch the socket but he refuses, so I haven't been too successful with that.

I would be appy to talk more with you, if you need. Also there is a great yahoo goup for phpv (search under health ).

I'm not sure how old Caitlin is, but I remember Tom had a head tilt before he started crawling - once he could move it disappoeared. The reason they develop it is, it gives them a wider view of the world. Close one eye and look around, then tilt your head and you'll see what I mean! Babies are so clever!!!

Good luck with the surgery and take care

Sophie.