Is frame-by-frame delayed vision a hallucination? Reason to fast-track IVIG?

[wisdom_seeker]

Is this a hallucination? How bad would it have to be to justify fast-tracking IVIG?

 

Context:
Anthem just denied IVIG though DS16 is pretty disabled (see @ bottom) and deteriorating. Each exacerbation seems to set a new worse "baseline". If this is a hallucination, perhaps it would make it easier for the MG to argue for the IVIG. (Is it possible I am hoping my kid is hallucinating??? Is that crazy? I figure you guys would understand, if nobody else!)

 

And I'm wondering if we should just give him IVIG now, bill Anthem, and continue the appeal process.

 

Here's the frame-by-frame delayed vision symptom:
When DS16 quickly moves his eyes or head, it's like his visual system can't keep up, either it's really blurry or he sees things jerkily, frame-by-frame, with a delay, so when he's moving his eyes/head quickly, what he sees is not not what is in front of him. He says that when he stops it takes a second or two till he sees what he is facing and looking at.

 

He already gets dizzy after nodding his head up/down, but this new 'feature' of his brain seems dangerous. The closest I've found is "frame vision" described by those VERY high on pot. So is this a hallucination, or how would you describe it? More importantly,

 

Would MDs (and insurance!) treat it as an urgent symptom to treat?

thanks,

Wisdom_seeker

 

PS. His other symptoms are Intense anxiety, with dark, aggressive intrusive thoughts, OCD, dizziness if he moves his head up/down, sensory intolerances, can't go to school, deal with water. This is despite NSAIDs, antibiotics, steroid bursts. Every 4-6 weeks he gets a new cold, and each time gets a new flare. .... and then another infection and new flare before he has time to get back to baseline. I sometimes worry this means we're running out of time and he'll be chronic... but I don't know.

Edited May 13, 2016 by wisdom_seeker

[TiredMom]

I'm not sure if this article describes what he's experiencing. It briefly mentions strokes and epilepsy:

 

http://brainblogger.com/2014/10/09/brain-trickery-seeing-in-slow-motion/

[TiredMom]

Here is a bit more about akinetopsia.

 

http://psychology.wikia.com/wiki/Akinetopsia

[LNN]

It doesn't sound like a hallucination - he's not seeing things that aren't there. It sounds more like a visual processing issue - inflammation of an optic nerve maybe...

Even if you did get a doctor to diagnose as a hallucination, I doubt insurance would agree to IVIG - that isn't a standard treatment for a mental illness. You need to stick to immune system-based disorders. Autoimmune encephalitis seems to be the dx with the most success.

 

I know you say Lyme is negative - sorry I can't recall what testing you did. But the 4-6 week cycles are often a lyme flag. A life cycle of some sort. If he keeps getting sick that often, it seems more like one infection going unresolved rather than a half dozen new infections. I know your kids have lots of sinus issues - that's my daughter's nemesis as well. I gained a tremendous amount of knowledge from Buhner's books on Lyme and Mycoplasma. Even though my DD was negative for myco, the book gave me lots of insight into the sinuses and infection migration, and lots of correlations to staph infections. We did abx and antifungals for a year and could not get rid of the infections in her sinuses. Then we used alchornea - one of the herbs I learned about from Buhner - and that did the trick. I've come to see certain herbs as far, far more effective and far gentler than the Pandas treatments we pursued. Cholestyramine was also a huge help with auditory and visual symptoms for my DD. Even if it isn't Lyme Buhner's explanations of the physical cascades of inflammation may spark other ideas.

 

Good luck with the insurance battle - if you can swing it, paying out of pocket may be your best option.

[wisdom_seeker]

Yes, upon further conversation with DS16, it was pretty clearly a visual processing delay of some sort. And fortunately is gone again.

 

Interesting what you said about Lyme. He's been on Zithromax, and we're planning to go off soon and re-do the Lyme panel from IgeneX. (Not looking forward to persuading him to do another blood draw, but....

 

And I certainly am thinking about self-paying the IVIG. This is taking soo long. If we pay up front what are the odds that they'd reimburse afterwards, given that IVIG requires precertification?

 

We could pay the drug for one, though I don't know how much the couple of days' hospitalization would cost on top of that. And, I worry that he'll need a few cycles, and I certainly don't want insurance to get the idea that we can continue to self-pay.