Blind and Visually Impaired Community
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i really need advice for my 10 years old daughter and her deteriorating vision. (self.Blind)
submitted by ale473
Hi, my daughter was born with a left inwards squint and before she was 1 was wearing glasses for short sightedness.
Over the last 10 years she has been patched 3 seperate times for a total of 1000hrs , each time the eye would correct for a short time and then the left eye would flip flop so it has been inwards, outwards, inwards and now 18 months after her last set of patching it is fully outwards. Her current prescription is +5.25 in her right eye and ×7.35 in the left. Her opthamologist has said she can have the operation to cosmetically center her eye.
As a result she has no 3d vision or depth perception and her peripheral vision is questionable as she often bumps into things, trips over things as will say she doesn't see the whole area. I can see myself she doesnt see objects before she bumps into them.
She often gets double vision when focusing such as reading, writing and other times such as the lighting in a room. This leads to migraines but her opthamologist denies the migraines are vision related.
Today my daughter is complaining that her left eye is completely black, with or without her glasses on. Could this be the brain now completely ignoring the left eye? Or is it something unrelated?
I am phoning her opthamologist tomorrow but he is very aloof and totally downplays what my daughter says about her visison. He just says she has functional visison so there is no issue. Yet her vision in a small room on her own doing a test she has done for 10 years is completely different to seeing in the real world, if that makes sense.
Any help would be greatly appreciated, even what i should be asking her opthamologist. As everything i read suggests her squint should have resolved after patching not got worse.
Over the last 10 years she has been patched 3 seperate times for a total of 1000hrs , each time the eye would correct for a short time and then the left eye would flip flop so it has been inwards, outwards, inwards and now 18 months after her last set of patching it is fully outwards. Her current prescription is +5.25 in her right eye and ×7.35 in the left. Her opthamologist has said she can have the operation to cosmetically center her eye.
As a result she has no 3d vision or depth perception and her peripheral vision is questionable as she often bumps into things, trips over things as will say she doesn't see the whole area. I can see myself she doesnt see objects before she bumps into them.
She often gets double vision when focusing such as reading, writing and other times such as the lighting in a room. This leads to migraines but her opthamologist denies the migraines are vision related.
Today my daughter is complaining that her left eye is completely black, with or without her glasses on. Could this be the brain now completely ignoring the left eye? Or is it something unrelated?
I am phoning her opthamologist tomorrow but he is very aloof and totally downplays what my daughter says about her visison. He just says she has functional visison so there is no issue. Yet her vision in a small room on her own doing a test she has done for 10 years is completely different to seeing in the real world, if that makes sense.
Any help would be greatly appreciated, even what i should be asking her opthamologist. As everything i read suggests her squint should have resolved after patching not got worse.
ale473 [OP] 9 points 1y ago
Thanks everyone we are on our way to a&e. Hopefully someone will take my daughter seriously there.
TheSecretIsMarmite 8 points 1y ago
You don't mention the country you are in, but a sudden total loss of vision in one eye would be worthy of a trip to A&E here. You should mention the migraines and also mention that you would like a neuro assessment.
ale473 [OP] 4 points 1y ago
Apologies we are in the UK.
she had an Mri in 2020 due to a severe cluster of migraines. The scan was clear and was then given a general pediatrician who prescribed beta blockers which caused more issues as they triggered GERD So we are now dealing with that via medication and diet.
Neither doctor seem concerned since the MRI was clear although both did separately say they thought it would have shown the presence of cerebral palsy.
It just feels like we are going round in circles.
she had an Mri in 2020 due to a severe cluster of migraines. The scan was clear and was then given a general pediatrician who prescribed beta blockers which caused more issues as they triggered GERD So we are now dealing with that via medication and diet.
Neither doctor seem concerned since the MRI was clear although both did separately say they thought it would have shown the presence of cerebral palsy.
It just feels like we are going round in circles.
Mamamagpie 6 points 1y ago
But total loss of vision in that eye is new symptom, if read that right. Go to the ER, don’t assume this related to other conditions. Go to the ER.
TheSecretIsMarmite 5 points 1y ago
Go to A&E anyway. This is a new symptom and needs urgent looking at. Go before the Sunday league footballers show up with busted ankles they've tried to cure with 4 pints of Stella.
suitcaseismyhome 3 points 1y ago
This sounds like an emergency.
I have had hemiplegic migraine since early childhood and now other rare forms, diagnosed by neuro opthalmology. Definitely those are related.
But the loss of vision needs attention now, today immediately.
I have had hemiplegic migraine since early childhood and now other rare forms, diagnosed by neuro opthalmology. Definitely those are related.
But the loss of vision needs attention now, today immediately.
MusicLover035 3 points 1y ago
We aren't medical professionals, but I'd recommend going to ER or something similar to that because what your daughter's experiencing sounds very worrying.
ale473 [OP] 2 points 1y ago
*UPDATE*
The neurologist said that there was intermittent ability in the eye to follow light and was happy the ct scan was clear so she was discharged from hospital.
The neurologist along with the opthamologist believe it is a processing issue between the weaker eye and the brain.
They both implied this could be more a psychological issue than a physical issue. The neurologist said it may require a physiologist to aid my daughter to make new pathways to overcome this.
We will have a follow up appointment with her opthamologist in a few weeks.
In the meantime i have to keep a diary of how she reports her eye to be.
My daughter is still saying her eye is black but she prefers it as it helps her overall vision. I am not sure what to believe at this point as i see how her vision impacts her day to day and do not see how it is a psychological issue. Yet the professionals are saying otherwise, all i can do is keep speaking up for my daughter and hope someone will listen.
Thanks to everyone for advice.
The neurologist said that there was intermittent ability in the eye to follow light and was happy the ct scan was clear so she was discharged from hospital.
The neurologist along with the opthamologist believe it is a processing issue between the weaker eye and the brain.
They both implied this could be more a psychological issue than a physical issue. The neurologist said it may require a physiologist to aid my daughter to make new pathways to overcome this.
We will have a follow up appointment with her opthamologist in a few weeks.
In the meantime i have to keep a diary of how she reports her eye to be.
My daughter is still saying her eye is black but she prefers it as it helps her overall vision. I am not sure what to believe at this point as i see how her vision impacts her day to day and do not see how it is a psychological issue. Yet the professionals are saying otherwise, all i can do is keep speaking up for my daughter and hope someone will listen.
Thanks to everyone for advice.
suitcaseismyhome 2 points 1y ago
Good morning, hopefully you had a positive outcome after your A&E visit. If you feel like sharing, please let us know the outcome.
And since I feel a bit of a similarity with your daughter, please let me share some advice. This is in no way meant as criticism, just some insight as to how you can help her. (I just wrote 'me', which is indicative of how I feel on this topic, but we are here to help young her, not young 'me')
She needs an advocate. That's you. She doesn't know what 'normal' people experience, and you can't know what she experiences. She cannot put into words things that even adults struggle to understand. (And she isn't clumsy, weak, just stressed, or anything else someone wants to label her)
I would suggest that you find a way for her to understand how to verbalize or draw out what she sees, and when she sees it. There are so many types of migraine, and so many types of aura. I well remember trying to explain the very distinct symptoms I had as a young child which would tell me one was coming. Adults brushed me off, or called me names.
As an adult, I can very clearly define how I was feeling. Alice in Wonderland syndrome, for example. A checkerboard coming down across my visual field. Aphasia. Usually this was all preceded by tingling in my left finger. My left side was always impacted. Eventually I would have the classic stroke like facial drooping and lack of motor skills on the left.
My migraines now are very different, but the first time I met as an adult with a neuroopthamology team it was so enlightening. I cry for young me, who had all that plus double vision, hidden strabismus, astigmatism, loss of visual field, and poor visual acuity. You already know a lot about her issues, and are able to explain the diagnosis, but not necessarily what she sees or feels.
I thought that was all NORMAL. I thought that EVERYONE saw and felt that way. Only later in my teens did I realise that wasn't normal, and as an adult I'm saddened about how much I lost and how much I punished myself for being 'weak'.
I hope that she had a positive outcome, and that this was just a scare, and nothing serious. But please, consider how you can help her to better explain what she is experiencing, so that she can find the best resources and support and care.
Best thoughts to you both.
And since I feel a bit of a similarity with your daughter, please let me share some advice. This is in no way meant as criticism, just some insight as to how you can help her. (I just wrote 'me', which is indicative of how I feel on this topic, but we are here to help young her, not young 'me')
She needs an advocate. That's you. She doesn't know what 'normal' people experience, and you can't know what she experiences. She cannot put into words things that even adults struggle to understand. (And she isn't clumsy, weak, just stressed, or anything else someone wants to label her)
I would suggest that you find a way for her to understand how to verbalize or draw out what she sees, and when she sees it. There are so many types of migraine, and so many types of aura. I well remember trying to explain the very distinct symptoms I had as a young child which would tell me one was coming. Adults brushed me off, or called me names.
As an adult, I can very clearly define how I was feeling. Alice in Wonderland syndrome, for example. A checkerboard coming down across my visual field. Aphasia. Usually this was all preceded by tingling in my left finger. My left side was always impacted. Eventually I would have the classic stroke like facial drooping and lack of motor skills on the left.
My migraines now are very different, but the first time I met as an adult with a neuroopthamology team it was so enlightening. I cry for young me, who had all that plus double vision, hidden strabismus, astigmatism, loss of visual field, and poor visual acuity. You already know a lot about her issues, and are able to explain the diagnosis, but not necessarily what she sees or feels.
I thought that was all NORMAL. I thought that EVERYONE saw and felt that way. Only later in my teens did I realise that wasn't normal, and as an adult I'm saddened about how much I lost and how much I punished myself for being 'weak'.
I hope that she had a positive outcome, and that this was just a scare, and nothing serious. But please, consider how you can help her to better explain what she is experiencing, so that she can find the best resources and support and care.
Best thoughts to you both.
ale473 [OP] 3 points 1y ago
Hi thankyou, i was going to update but hadn't had a minute since we arrived.
We are in hospital overnight, ct scan and blood work were clear, they want to keep her for 24hr to do neuro observations. Tomorrow we have to go to another hospital to see opthalmology as the pediatrician and oncall opthamologist thinks it could be an issue with the blood vessels at the back of her eye. Fingers crossed tomorrow brings about answers.
Your younger self is my daughter she has strabismus, astigmatism and considerable visual feild deficit more so anything below top lip is missed unless she is looking down at her feet but then misses what she is walking into (vicious cycle trying to work out the safest way to walk), she also complains about green floaters and definetly has some sort of light reactivity in certain artificial lighting. Even the way she watches tv is odd, as she sits with her head at a peculiar angle to see the whole screen. Yet the opthamologist never really does anything and just repeats the same old "well she can read which is functional vision, so there is no issue".
I genuinely feel i am hitting my head of a brick wall or sound like some neurotic mother. I just know what i see each day and how she behaves compared to her sister who had the same squint that corrected.
I full heartedly believe they need to take on board what is seen in real life as opposed to the test conditions in a doctors office. Especially when she has done the exact same tests since she before she could walk .
I know something is missing. She also has had reoccuring GERD since birth and is on the maximum medication for her age yet still has painful flare ups lasting days that even irritate her ears.
She is either the unluckiest child going or there has to be some for of connections between the 3 issues .
We are covered by the nhs, how would i find a neuro opthamologist to get a second option, if that is even possible?
We are in hospital overnight, ct scan and blood work were clear, they want to keep her for 24hr to do neuro observations. Tomorrow we have to go to another hospital to see opthalmology as the pediatrician and oncall opthamologist thinks it could be an issue with the blood vessels at the back of her eye. Fingers crossed tomorrow brings about answers.
Your younger self is my daughter she has strabismus, astigmatism and considerable visual feild deficit more so anything below top lip is missed unless she is looking down at her feet but then misses what she is walking into (vicious cycle trying to work out the safest way to walk), she also complains about green floaters and definetly has some sort of light reactivity in certain artificial lighting. Even the way she watches tv is odd, as she sits with her head at a peculiar angle to see the whole screen. Yet the opthamologist never really does anything and just repeats the same old "well she can read which is functional vision, so there is no issue".
I genuinely feel i am hitting my head of a brick wall or sound like some neurotic mother. I just know what i see each day and how she behaves compared to her sister who had the same squint that corrected.
I full heartedly believe they need to take on board what is seen in real life as opposed to the test conditions in a doctors office. Especially when she has done the exact same tests since she before she could walk .
I know something is missing. She also has had reoccuring GERD since birth and is on the maximum medication for her age yet still has painful flare ups lasting days that even irritate her ears.
She is either the unluckiest child going or there has to be some for of connections between the 3 issues .
We are covered by the nhs, how would i find a neuro opthamologist to get a second option, if that is even possible?
TheSecretIsMarmite 1 points 1y ago
You may need to get a referral from her GP but the ophthalmologist you see today when transferred may be able to refer you. Some hospitals have bigger facilities than others so being transferred to an alternative hospital for a look-see today may help get your daughter in front of the right doctor.
River-Song-1986 2 points 1y ago
You need to find her a new ophthalmologist. Her eye doctor should not be minimizing what she's telling you or him.
TechnicalPragmatist 1 points 1y ago
Yeah, seeing a different eye doctor may be good here. And just changing doctors.
Also I agree. A cane may really benefit her.
Also I agree. A cane may really benefit her.
yamallama0330 1 points 1y ago
FOR THÉ LOVE OF GOD GET HER A CANE 😭😂 I’m sixteen and got a cane around the age of your daughter, but t helps so much. I have very little vision but still lead a functional life (only 5% in my left eye), and there should be o&m (orientation and mobility) teachers near you. I would recommend getting her started on that asap so that she doesn’t have an accident and fall down three flights of stairs like I did lmao
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