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Can anybody help my 13YEAR old daughter

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Old 07-12-2019, 08:25 AM   #1
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Default Can anybody help my 13YEAR old daughter


Dear sir.
I apologise for the unconventional approach, but I am at a loss and I am trying all ways to get some answers. We are desperate!
I am hoping that if this is not your field of expertise, you might be able to forward on to any Neurologists and neurosurgeon that you might know within the hospital, and in turn they can forward on to their colleagues within the profession, so on and so on!

My daughter had a sudden onset of a condition in November 2018, of which I will outline below.
After having CT and MRI scans, seeing well over a dozen Paediatric doctors, Opthalmists and a pyscologist, nobody is able to offer a diagnosis, as they have not seen anything like it before. she is now under the care of a Paediatric Neurologist whom again, does not know what the problem is, as she also has never encountered it before.

On November 19th 2018, my daughter came home from school, unable to close her eyes fully, her eyes had rolled up, and she had constant rapid blinking, and loss of vision.
This was initially treated as allergic conjunctivitis and dry eye, but to no avail.
As time has moved on, her eyes settled back down and she did gain some sight back, although the rapid blinking has never decreased.

On Friday 28th June 2019, she was sent home from school, as again her eyes had rolled into her head, as she put it, and she has again lost her vision. She was unable to identify how many fingers the doctor was presenting to her at the hospital. She was sent home from the hospital, the same day, “as there is nothing else that they can do” !

She has been for an eye test today 12/07/19, but they could not do it because she was unable to control her eye movements to see the chart!

I do have videos of her condition at different intervals, should they be of any help.

As you can imagine, we are desperate for any glimmer of help, in trying to get to the bottom of this. Or hoping that someone has seen these types of presentations before, to give us a lead to possibly follow!
She’s 13, has now been given indefinite leave from school, due to health and safety concerns, she can’t do all the normal things a 13 year old should be doing, phone, tv, computer, etc as she can’t see properly.

I would like to take the time to thank you for reading this, and just hope somebody can help!

I await any reply’s in due course.

Kind regards.
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Old 07-12-2019, 05:25 PM   #2
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Hi Mummio4007

Welcome to NeuroTalk .

I am sorry to read about your daughter. It is something that is outside my experience but the information in these two sites may be of help to you.

Blinking and eye problems | The Dystonia Society
Blepharospasm - Better Health Channel

All the best.
Knowledge is power.
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Old 07-12-2019, 06:23 PM   #3
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Default Kiwi

Dear kiwi,

These where my first thoughts, and I pushed these when it first happened in November, but they have been ruled out, even though she does have intermittent vocal dysphonia and she does have focal dystonia to her left little finger, hence why I’m trawling the internet for possible solutions! Many thanks anyway, for taking the time to read and reply. Xx
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