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.

[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.

[angelkate]

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

[Sym]

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.

[sams_mum]

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?

[WillowsDad]

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

[MistyFying]

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.