G'day
Well, what a draining and emotional last 4-6 weeks we've been having - as you may (or may not) have noticed, I have been somewhat "offline" for the last few weeks.
Some of you are already aware, however about 2 months ago, our daughter Keeley (7 in December) started complaining of headaches and blurred vision - she's a pretty switched on kid who has never showed signs of either problem previously. After a few 'routine' GP visits, he suggested we see an Optometrist as he felt she may be short/long sighted and subsequently, not having glasses to correct it would potentially be causing her to have headaches ... no biggie ...
Off to the Optometrist we go, and before we know it (2 visits about 4 weeks ago), the optometrist gives us the news that she is long sighted and needs glasses - this bit we were expecting, the rest of the news we were not prepared for ...
The Optometrist said she'd like to run some more tests on Keeley's vision as she was concerned about her responses from the right eye. Of course, as any parent would, we organised the tests. Long story short, the Optometrist gave us a referral to an Opthamologist as in her assessment, Keeley had less than 10% vision in the right eye, no peripheral vision, and of course no depth perception, and was now classed as legally blind in that eye. This somewhat rocked my world as you could no doubt imagine. No reason, no cause, no idea - just that she had for some reason started losing sight and we had to find out why.
We visited the Opthamologist on Tuesday 18th of October. Again, long story short after a range of testing, Keeley has Optic Nerve Atrophy in the right eye. For those not wishing to Google it - Atrophy is a reduction/degredation of the nerve (basically something has been/is killing it off). Problem being, is that there are many causes of Atrophy in young children, so isolating the cause is now the name of the game.
What rocked us next is that the leading causes of Childhood Atrophy (as a %) are Brain Tuma's; Optic Nerve Tuma's and Multiple Schlerosis - these causes take up about 68% of the leading causes. The Opthamologist booked her in for a range of tests including VEP's (Visual Evoked Potential - testing mainly for MS) in which she has to wear electrodes on her head with verbal, visual and electrical stimulus to create response (remember - she's 6), with the major test being an MRI scan. For those of you who've had an MRI, it's un-nerving for many adults, let alone kids with most children being placed under anaesthetic as they tend to freak out. The MRI was conducted Monday and she was a dead set soldier!!!! She was in the machine for 30 minutes and truth be told, had to be woken up as she was nodding off !!!
More long story short (and if you've stayed with me this long, I'm greatly appreciative), is we got the test results back today ...
No tuma's!!! No foreign bodies, lesions or otherwise present on the optic nerve, optic pathways or in the brain ... you have no idea how emotional I was in hearing this!
Whilst not ruled out with more tests to be done (but certainly pushed waaaay down the list now) - No Multiple Schlerosis!!!! The myelin sheaths looked normal (myelin is the layer around your nerves in your brain, spine etc that MS attacks), and in the doctors words with the level of Atrophy there would be visual damage to myelin in the test results, but in a word - normal.
To put it simply, the simple causes were ruled out first and immediately. The sad reality though is the highest percentile causes in her age group are tuma's and MS and subsequently, she needed to be tested for the more critical causes immediately (many sleepless nights for dad). They have now 'mostly' been ruled out, with the remaining tests to identify if the cause is progressive (like degenerative eye disease), but again, the Opthamologist seemed fairly confident in his opinion that this too was well down the list, with the most likely cause being Hypoxy Ischemia - essentially a blood supply loss to the nerve at some point that critically impaired it at a key point of growth. If that's the case, then again in the doctor's words "she is a very lucky girl, falling into a category of about 8% of childhood atrophy causes" ... 8% ... today is a good day people!!!
She isn't out of the woods yet, and the sad reality is she will never have vision returned to the eye, however it shouldn't get any worse. She has to wear a patch for 6 hours a day for two primary reasons - firstly to stop her brain from shutting the eye down due to lack of information being received through it (and thus preventing her eye from turning inwards), and secondly to force her motor skills and senses to improve around her right eye. There is still a slight chance of something more sinister, but considering the "evil" causes were the likely outcome just days ago, I am more than confident of a positive end result and we are no quitters. It is the best of the worst outcomes.
To those who knew what was happening, I cannot thank you enough for your sincerity and support throughout what was one of the most emotional and draining times in my life. For those who didn't know, I sort of kept it quiet as I wasn't looking for sympathy and really had no answers to give at that point, but your prayers and well wishes to her (I'm going to show her this thread) are still more than welcomed and appreciated.
Some happy snaps of "Mudsy" (my nickname for her as she was a mud guts like her old man when she was a bub!! lol).
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The first night with her new glasses and eye patch.
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And nothing like throwing her in the deep end (nice one dad .. dipsh!t) ...
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I'll update once I have more information, but to say we're relieved is an understatement. Amazing how your world literally shifts in an instant when you think your kids are in any form of danger.
For all those out there who've gone through it, are going through it, and/or know those who are (whatever the cause), my heart goes out to you - it is an all consuming process and one particular emotional rollercoaster I don't recommend.
Thanks again one and all from Keeley, all the family, and especially me ...
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Originally Posted by Ade
