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Is it certain that he is getting eye muscle surgery? I'm wondering if it might make sense to push that up and see where he is at that point to plan from there.

 

What sort of provider did the insurance refuse? Some insurance that will turn down vision therapy will pay for an OT who specializes in vision.

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I hope the next appointment goes better. It is very frustrating what insurance will pay for and what they won't!

 

This may be entirely irrelevant to your situation as it sounds like there is some family history, but I'll share this experience in case it helps... when our son got an MRI someone suggested I talk to the anesthesia nurse ahead of time. He told me that what they often use for kids with MRIs (I believe it was maybe phenobarbital) has some kids flipping out and terrible to deal with. He suggested instead that we get propofol. Apparently that's not the first thing they order because it requires an anesthesiologist, but it worked really well for our child.

 

For the actual eye muscle surgery they gave Versed as the get them calmed down (or "drunk" as they put it) and even with a double dose it had absolutely no effect, but the actual anesthesia was fine. The eye muscle surgery was fast and the recovery was easy. So, if the anesthesia part an be worked out, maybe it would help.

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As an alternative, have you looked for a COVD doc further away? And is the doc you're considering a Fellow? I know the lead doctor (a Fellow) at the practice we used offered to take a case like yours for free because she felt so strongly she could help. I'd call and search further. They can give you homework and stretch out the appointments, making even a longer distance manageable.

 

Unfortunately, the case they told me about, where they offered to do the VT for free, turned them down and did surgery. Apparently it was the 3rd time and the dc totally lost her eyesight. So it's not without consequences to chose the surgery. I'm not trying to scare you. I'm just saying I would try harder on that VT end. It can be as infrequent as once a month and still have her make great progress.

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