Blind and Visually Impaired Community
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UPDATE. (self.Blind)
submitted by ale473
I am unsure how to link my previous post where i requested advice for my daughter due to a sudden loss of vision. I thank-you all for the advice at the time and any advice you may have on the update i am providing.
My daughter was given an MRI and CT Scan which both came back clear. She was also given Goldmann field test which showed she has zero peripheral vision. The neurologist believed there was intermittent ability in the eye to track light. Overall the neurologist and opthamologist were stumped but not overly concerned and discharged her from hospital.
Since then we had a follow up appointment with opthalmology which resulted in my daughters prescription being changed to plus 10 and she still reports the eye is black. The opthamologist then suggested contact lenses as she believed her loss of peripheral vision was due to the frame of her glasses. The opthamologist also suggested the vision issues were a result of the nervous system having faulty communication pathways between the eye and brain.
Today my daughter had her contact lens training, she was amazing and picked it up straight away. Unfortunately the contact lenses made her vision in the "good eye" worse as it became double vision and she couldn't see past 20 cm.
Can anyone explain how the contact lens caused this please, as all the optician said was she had spoke to the opthamologist who prescribed them and they knew what had happened and a new set would be ordered.
I really don't want to sound stupid but i can't find any information on anything relating to "communication pathway" online. Has anyone heard of a "communication pathway" issue? Also who/how would this be treated of it can be treated at all.
It just feels like i end up with more questions than answers and i worry for the long term implications for my daughter as the opthamologist does not accept she has a visual impairment therfore my daughter is not entitled to any support of any kind.
Again i appreciate any advice you can give me.
My daughter was given an MRI and CT Scan which both came back clear. She was also given Goldmann field test which showed she has zero peripheral vision. The neurologist believed there was intermittent ability in the eye to track light. Overall the neurologist and opthamologist were stumped but not overly concerned and discharged her from hospital.
Since then we had a follow up appointment with opthalmology which resulted in my daughters prescription being changed to plus 10 and she still reports the eye is black. The opthamologist then suggested contact lenses as she believed her loss of peripheral vision was due to the frame of her glasses. The opthamologist also suggested the vision issues were a result of the nervous system having faulty communication pathways between the eye and brain.
Today my daughter had her contact lens training, she was amazing and picked it up straight away. Unfortunately the contact lenses made her vision in the "good eye" worse as it became double vision and she couldn't see past 20 cm.
Can anyone explain how the contact lens caused this please, as all the optician said was she had spoke to the opthamologist who prescribed them and they knew what had happened and a new set would be ordered.
I really don't want to sound stupid but i can't find any information on anything relating to "communication pathway" online. Has anyone heard of a "communication pathway" issue? Also who/how would this be treated of it can be treated at all.
It just feels like i end up with more questions than answers and i worry for the long term implications for my daughter as the opthamologist does not accept she has a visual impairment therfore my daughter is not entitled to any support of any kind.
Again i appreciate any advice you can give me.
suitcaseismyhome 1 points 1y ago
Here's the previous thread you wanted to link, if anyone needs details
https://old.reddit.com/r/Blind/comments/tvbhs1/i_really_need_advice_for_my_10_years_old_daughter/
https://old.reddit.com/r/Blind/comments/tvbhs1/i_really_need_advice_for_my_10_years_old_daughter/
suitcaseismyhome 1 points 1y ago
Hi, I think that your daughter was the child who has similar issues to what I experienced as a child, and am experiencing again? (Besides the other myriad of vision issues I am dealing with)
Re the 'communication pathway' I was told that essentially my brain cannot interpret the pictures it's being sent.
I've been told a variety of things from doctors I trust. In my case, glasses wouldn't have helped as much as contacts did, because glasses aren't directly on your eye and thus there is some distortion? (Not sure about all that, but basically my vision sucked worse with glasses than with contact lenses) I used to see a Swiss specialist who spoke a lot about the science of lenses but it was all too technical for young me.
I had decades undiagnosed strabismus, to the point of being off the various measurement tools. It only came to light when I was much older, because I could advocate for myself, and describe what was going on. Ironically, many of the tests had bunnies and horsies etc because they were meant for small children, not an adult who had basically been ignored as a child. Has she had orthoptic testing?
My brain apparently gave up after a few decades, and cannot put the picture together anymore. I could have had strabismus surgery as an adult (had I not lost my functional vision due to other issues)
Has she seen a neuro opthamologist? My team was phenomenal at putting the pieces together, and I had a lot of fun with them, and the various tests.
Has she been tested for myastenia gravis, MS, lupus, etc?
I also had various types of migraines. Hemiplegic, and visual, and migraine with aura, and tinnitus caused by migraines, and colour distortion caused by migraines. I also had Alice in Wonderland syndrome at least weekly as a child.
Try looking those up, and see if anything helps. It really does sound like she's dealing with a lot of what I had as a child, and sadly I didn't have a parent like you who tried to find answers.
Good luck!
Re the 'communication pathway' I was told that essentially my brain cannot interpret the pictures it's being sent.
I've been told a variety of things from doctors I trust. In my case, glasses wouldn't have helped as much as contacts did, because glasses aren't directly on your eye and thus there is some distortion? (Not sure about all that, but basically my vision sucked worse with glasses than with contact lenses) I used to see a Swiss specialist who spoke a lot about the science of lenses but it was all too technical for young me.
I had decades undiagnosed strabismus, to the point of being off the various measurement tools. It only came to light when I was much older, because I could advocate for myself, and describe what was going on. Ironically, many of the tests had bunnies and horsies etc because they were meant for small children, not an adult who had basically been ignored as a child. Has she had orthoptic testing?
My brain apparently gave up after a few decades, and cannot put the picture together anymore. I could have had strabismus surgery as an adult (had I not lost my functional vision due to other issues)
Has she seen a neuro opthamologist? My team was phenomenal at putting the pieces together, and I had a lot of fun with them, and the various tests.
Has she been tested for myastenia gravis, MS, lupus, etc?
I also had various types of migraines. Hemiplegic, and visual, and migraine with aura, and tinnitus caused by migraines, and colour distortion caused by migraines. I also had Alice in Wonderland syndrome at least weekly as a child.
Try looking those up, and see if anything helps. It really does sound like she's dealing with a lot of what I had as a child, and sadly I didn't have a parent like you who tried to find answers.
Good luck!
ale473 [OP] 1 points 1y ago
Ahh yes i remember your orginal comment. I did ask about a neuro opthamologist but apparently my area (within the UK) does not have a pediatric neuro opthamologist. My daughters current opthamologist just said she would speak to the neurologist and see where we go next.
It just feels like i hit my head of a brick wall as you report exactly what my daughter reports yet no one has an answer and i as her parent can not do a thing to help her.
It just feels like i hit my head of a brick wall as you report exactly what my daughter reports yet no one has an answer and i as her parent can not do a thing to help her.
suitcaseismyhome 1 points 1y ago
From your original thread:
> Even the way she watches tv is odd, as she sits with her head at a peculiar angle to see the whole screen
My neuro opthamologist (before I had my recent vision loss) said that I do that when I am speaking, looking, etc and that's a CLASSIC sign of trying to get the brain to interpret images that have been distorted (usually to double vision, not standard horizontal or vertical, but on a diagonal or shifting)
Again, your child could have been younger me.
I'm not sure of the UK system, but you really need to get her seen by someone on the neuro side. Neuroopthamology, but if they don't do that for children, then neuro. A lot of neuro ophthalmologic issues are due to other illness, including some of the ones that I listed.
Has she been tested for any of those? Does she has any auto immune indications? Who is treating her for her probable migraines?
You need to keep pushing, and you need to be firm, and not care if you are 'that person'. Once I did that as an adult, it became clear how much I dealt with as a child. Sadly, nobody listened, nobody pushed, and I thought that was 'normal' and that everyone saw that way, and had that much pain every day.
Don't let her become an adult and discover that, please. PLEASE find her the medical care she needs.
> Even the way she watches tv is odd, as she sits with her head at a peculiar angle to see the whole screen
My neuro opthamologist (before I had my recent vision loss) said that I do that when I am speaking, looking, etc and that's a CLASSIC sign of trying to get the brain to interpret images that have been distorted (usually to double vision, not standard horizontal or vertical, but on a diagonal or shifting)
Again, your child could have been younger me.
I'm not sure of the UK system, but you really need to get her seen by someone on the neuro side. Neuroopthamology, but if they don't do that for children, then neuro. A lot of neuro ophthalmologic issues are due to other illness, including some of the ones that I listed.
Has she been tested for any of those? Does she has any auto immune indications? Who is treating her for her probable migraines?
You need to keep pushing, and you need to be firm, and not care if you are 'that person'. Once I did that as an adult, it became clear how much I dealt with as a child. Sadly, nobody listened, nobody pushed, and I thought that was 'normal' and that everyone saw that way, and had that much pain every day.
Don't let her become an adult and discover that, please. PLEASE find her the medical care she needs.
ale473 [OP] 1 points 1y ago
Her general pediatrician treats her migraines and reflux with medication . She has had reflux since birth causing failure to thrive, it was around this age she was diagnosed with a squint that was apparent from around 4 weeks old.
She is my youngest and her sister also had a squint in the same eye and the same far sightedness just not as severe as her prescription is plus 3.75 and only required one course of patching and has had zero issues since accept requiring glasses. Neither parent requires glasses or have family history of vision issues. My son has no vision issues at all.
The pediatrician, opthamologist and now the neurologist just push it back to the other person. No one actually has a solid plan or solution other than things might settle in time. They are happy it isnt serious as the MRI and CT was cleared.
She still reports the left eye is black and she describes an intermittent waving flag effect in her good eye when she focuses on things.
I just want to scream at this point as she is forever covered in bruises from trips and falls. Eventually she is going to break something or worse. Yet no one seems to care.
She is my youngest and her sister also had a squint in the same eye and the same far sightedness just not as severe as her prescription is plus 3.75 and only required one course of patching and has had zero issues since accept requiring glasses. Neither parent requires glasses or have family history of vision issues. My son has no vision issues at all.
The pediatrician, opthamologist and now the neurologist just push it back to the other person. No one actually has a solid plan or solution other than things might settle in time. They are happy it isnt serious as the MRI and CT was cleared.
She still reports the left eye is black and she describes an intermittent waving flag effect in her good eye when she focuses on things.
I just want to scream at this point as she is forever covered in bruises from trips and falls. Eventually she is going to break something or worse. Yet no one seems to care.
suitcaseismyhome 1 points 1y ago
You need to get her the care she needs. Request a neuro consult. If not neuro ophthalmology, then neurology with a different doctor.
Has she been tested for any auto immune diseases? Several could be playing a role.
I'm not sure how it works in the UK re referrals, but if you cannot get a referral then you will need to consider going private for at least a first consult.
I know that you are trying, but your daughter risks growing up resentful, or not understanding what is 'normal', and at worst having permanent damage. You should be actively searching to change her medical team. They are not acting as a team, and they are not helping her if they ignore her and refuse to even test.
I hope that at the minimum you have her in therapy, so that she can understand that this isn't her fault, that she isn't imagining things, and how to deal with being ignored. And a good therapist can help to get her referred.
Has she been tested for any auto immune diseases? Several could be playing a role.
I'm not sure how it works in the UK re referrals, but if you cannot get a referral then you will need to consider going private for at least a first consult.
I know that you are trying, but your daughter risks growing up resentful, or not understanding what is 'normal', and at worst having permanent damage. You should be actively searching to change her medical team. They are not acting as a team, and they are not helping her if they ignore her and refuse to even test.
I hope that at the minimum you have her in therapy, so that she can understand that this isn't her fault, that she isn't imagining things, and how to deal with being ignored. And a good therapist can help to get her referred.
thebrightworker 1 points 1y ago
if i were to take an educated guess at what they mean by the communication pathway, they are implying that there's potential for something quite literally between the eye and the brain that could be problematic. including the brain itself and probably the eye too.
​
i was going to do a wordy waffly description of how the pathway is connected etc, but then.. i think this site and graphics will be betty suited to explaining.
$1
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i was going to do a wordy waffly description of how the pathway is connected etc, but then.. i think this site and graphics will be betty suited to explaining.
$1
thebrightworker 1 points 1y ago
>I really don't want to sound stupid
you could ask a million questions and still not sound stupid because youre doing your due diligence and that is to be commended.
i'm sorry but i can't really offer any information relevant to your queries though.
you could ask a million questions and still not sound stupid because youre doing your due diligence and that is to be commended.
i'm sorry but i can't really offer any information relevant to your queries though.
TechnicalPragmatist 0 points 1y ago
Has she had any blindness training, or services from her school. Advocate for it, put it in her plan at school. Get her some cane training, and some assistive technology that could help her.
ale473 [OP] 1 points 1y ago
The problem is her opthamologist will not record my daughter as having a visual impairment despite all the deficits. Therefore i am unable to apply for support.
We just seem stuck in a hopeless loop.
This is on top of the school and her football coach both raising concerns over her vision.
We just seem stuck in a hopeless loop.
This is on top of the school and her football coach both raising concerns over her vision.
TechnicalPragmatist 1 points 1y ago
That’s interesting and tough. Not to familiar with this process.
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