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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
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. :)
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
:hug: 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!
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
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.
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
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 !
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 :dance:
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
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.
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 :D
Its a bit quiet in here....
How is everyone going ? Would love to chat more on this thread if others are interested.
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
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.
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! :D
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.
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 :D
Sophie.
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 :D
Sophie.
I am Kate, a mother of a two year old, Angelina, but it is me who is visually impaired. I have Retinitis Pigmentosa (and am also profoundly deaf).
I know this is a thread for the parents of visually impaired kids but since I was a young girl I have always vowed that I would one day help other disabled kids. I embarrassingly admit, and share for the first time, that I declared to myself that I would one day be the 'Princess Di' to disabled kids! (This was in the eighties when she was, in my mind, just a sweet princess visiting the poor and the sick. Pre-divorce.) Sounds so corny, but what actually happened was my mother mentioned how wonderful it was, when I was just a toddler, to have met a young deaf woman and seen that she was a success. My mother had been told that I would never speak properly, never finish school, and therefore, not have much of a life. Perhaps that woman had changed my life by letting my parents see that anything was possible. I was never held back. As it is, most people don't know about either of my disabilities, I finished school, got a degree, travelled and worked around the world, married and had a child. Not a bad life for someone who wasn't suppose to amount to anything much.
I am at a stage in my life now (as all new mums probably go through) where, while looking at your own child, you also reflect on your own childhood. I have terrible self-esteem issues and have come to realise that my disabilities and childhood experiences are the direct cause of that. The other day I saw a little deaf boy at my daughter's day care and I had this overwhelming desire to protect and shelter him. It was like I could see his future and it upset me to imagine all the hurt, frustrations, and challenges that lay ahead. It was an effort for me to just walk away, though I do admit I look out for him, and especially his mother, when I go to day care. I am hoping to 'bump' into them and get talking. This 'Princess Di' thing of mine is turning me into a freaky stalker! Lucky for them, (or is it unlucky), we may never cross paths as they go on a different day to me.
Gosh, look at me rambling on. I guess what I am trying to say is that I am more than happy to be a voice for your little ones and answer any questions you may want to ask about growing up as a disabled child.
Being deaf from birth, and legally blind since I was in my late twenties (I am now 37 and still don't use any vision aids although told I'd be fully blind by my thirties), you could say I have been through quite a bit. One thing that comes to mind is one thing you are probably all going through right now which is the endless medical appointments. As a small child I hated them so much but all I could do to express my anger was to revert inside and remain silent. I remember apologising to my parents just a few years back for giving them the silent treatment whenever we went to appointments but all they could remember was that I was such a remarkably patient little girl! They actually sighed with relief that it was me with the problems, not one of my two brothers, who wouldn't have lasted five minutes in a waiting room!
Oh, and while speaking about medical appointments. Even though a small child may not have any understanding of what is going on or being said, they are very capable of noticing that Mummy and Daddy are very upset. I'll never forget the feeling I had when sent out from the eye doctor to the waiting room while my mother stayed in there talking for what seemed an eternity, then emerged crying. It upset me more than finding out that I would go blind. It hurt to see my mother so distraught.
So anyway, my thoughts go out to you all and your very special little ones. I don't know if my little angel will have vision loss. i pray she won't but should she, I know she'll still have a wonderful, successful life. I'll show her.
Please feel free to get in touch if you want to talk about anything. I'd love to help.
Kate
I started typing my post here and my little son decided to delete it... let's try again.
Hi Kate, thanks for your post, It struck a cord with me straight away and brought tears to my eyes thinking about my own son. He's 2 years old and had electrophysiology testing done about 2 weeks ago. I have since got part of the report back which says he has clear cut vision abnormalities and I should expect that his vision will become progressively worse with an average age of becoming legally blind at 15.5 years.
He has Bardet Biedl Syndrome (BBS) and part of this syndrome includes Retinitis Pigmentosa (among other things) but it's the vision loss that really scares me, however it makes me feel a bit better about his future after reading your post and seeing that you have accomplished so much.
I am 21 weeks pregnant and this baby was also diagnosed with BBS last Thursday after I had my ultrasound. So this last week all I have been thinking about is what kind of life my two little boys can look forward to? And what effect is it going to have on my eldest son who is not affected by BBS? It really scares me.
I'm sure I have a million questions to ask you, so I hope you won't mind me coming back here and asking you. It's just at the moment I'm still trying to come to terms with having 2 children with BBS. So thanks again for your post. :)
hi all havent visited in a while hope all is well, wondering if anyone has to patch their LOs eyes? sam is now one and has had his eyes patched since he was 12 wks all was well until about 3 months ago he figured how to pull them off!!! now im trying to find a way to prevent him form doing this. i have tried using mittens and socks and the work ok for about an hour- he needs the patch on for at least 2 hrs every 2 days.
does anyone have any tips or tricks?
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
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?
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 :pray:. 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.
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
Hi all
Our little girl has just been diagnosed with Posterior and Anterior HPHV in her left eye. We have begun patching to see if there is any vision at all and I dont think there is at this point. The first Pediatric Opthalmist said there is nothing w can do surgery wise. We are having a second opinion in a couple of weeks.
We are over in Sydney and would love to speak to some other parents of children of any age with the same problem
geoff.freer@oilsearch.com
Geoff, Miriam and Willow
Hi Geoff and welcome to BellyBelly. I hope you soon feel at home in this community - and that some of the parents of visually impaired children pop in to this thread soon.
Hi.
I've just found this forum while searching for something else, and I wish I'd found it earlier!
I was born with congenital cataracts, and am now legally blind, and my younger two children (boy and girl twins) have also got it - I didn't know it was a genetic thing until they were born.
My son has also had glaucoma in his left eye.
My kids are nearly ten, and they are doing really well. Those parents with kids getting ready to go into preschool or childcare, from personal experience, you need to go to the place and let them know, and try and let them know EXACTLY what your child can and can't see. Do it early, like two or three months before they start there. Tell them how you deal with situations at home so they can do the same there. I did this with both playgroup and preschool, and the teachers said it was useful to have advance warning, as well as info on what to do, because they could look stuff up to help as well and not just get thrown in the deep end.
Hope everyone's operations and tests go okay.
Michelle
Hi my name is Jayne, I have three beautiful children (2 girls and a boy). We found out shortly after birth our son, Lincoln has bilateral iris choroidal colobomas, strabismus and nystagmus. We have been on quite a journey, communting to Perth every few months for testing.
We are currently awaiting results from electrophysiology done a month ago to determine if Lincoln will have a high visual impairment. He is also being tested for the CHARGE syndrome.
It certainly an overwhelming time but we have encountered some terrific services and people already.
I'm glad I found this group , it will be wonderful to share experiences and ideas .:p
Hi All,
I am so glad to see that this website is available. My daughter, Kaylee, was born with vision in only one eye. She sees nothing out of her left. It has been quite a struggle and adjustment learning to deal with this. She is in 2nd grade now. We had rough time during K and 1st grade.
She amazes me more and more every single day with what she has overcome to deal with her school work. I am proud to say, she has all A's and 1 B this six weeks!!!
My hearts and prayers are with you mom's that have a child with a vision impairment! Stay strong and keep your heads up!!!
Jade
Hi all. Not sure if I fit into this category or not, so if I dont, just let me know.
DS Logan was diagnosed with Oculocutaneous Albinism last week, after the MCHN picked up roaming nystagmus.
I have a house call from Vision Australia on the 19th November, to talk more about Logan's vision, and how we can improve it.
Bridg.