Tonight we met with Dr. Pattie and Gavin’s Case Manager from his insurance company. The topic tonight was the Mayo Clinic.
While none of his medical doctors were there tonight but this wasn’t really that kind of meeting. The meeting was really more about discussion and brainstorming than anything else.
I mentioned earlier that this was an experience that left me feeling depressed.
Even if we can figure out the logistics of a trip to the Mayo Clinic, the risks vs gain are unknown at this point. Basically, there’s no guarantee that the Mayo Clinic can do anything more formal in than the Cleveland Clinic has already.
Assuming that the Mayo Clinic would take Gavin’s insurance, there would be an enormous out of pocket expense, associated with traveling across several state lines. At this point in time, we couldn’t afford to make the trip. We still haven’t replaced our van. That’s right, we’ve been vehicle-less for over 5 months now. The only reason we get anywhere is because my parents help us or loan us their car.
It’s not pretty or something I’m particularly proud of but it is what it is and there’s not anything I can do about it right now.
The uglier side of things is that the majority of the information we are basing the need to make this trip on in the first place is most likely fabricated.
Because Gavin’s health is so fragile, we can’t afford to take the chance that at least some of what he’s claiming is happening, is actually happening.
Here’s the bottom line. Gavin’s in the middle of a psychotic break and I don’t think he could tell the truth about anything to save his life.
This puts us in a really bad and honestly unfair position.
If Gavin’s claims that he’s been collapsing at school are fake, then this entire process and all the stress that we’ve been facing, are for not. This trip, while necessary at some point, wouldn’t be as emergent.
I wish that I could just ask Gavin if this stuff is really happening and know that I could trust his answer 100%. Then we could move forward and know with reasonable certainty, that we were doing the right thing.
As it stands, we have to try and figure out what the right thing to do is.
I’m at a total loss…….. It breaks my heart to know that I can’t trust my son and it scares the shit out of me, thing about what could happen of we don’t take this seriously…….
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Could he be flown under sedation to keep the dysautonomia stable? Sounds like doing so, if he can medically handle the sedation, might be medically necessary (and thus covered by insurance) to get him there…? Also, is telemedicine a possibility? That way u could meet with Mayo docs without leaving the comfort of your home or state.
try not to take it personal Rob. he is not out to get you i am sure of that and i am sure you know that. just saying
I really feel for you. I am having a trust issue with my dyspraxic 17 year old niece who lives with us. It is nothing like you have with Gavin but is serious in other ways. For me it was like a kick in the teeth after everything we have done to help her. I felt betrayed. I hope you can get to the bottom of this and move forward.