Operation Hope: Enter the Alpha Blockers



I just got off the phone with the Cleveland Clinic and it’s been decided that the best course of action, at least for Gavin’s elevated heart rate is to begin using alpha  blockers. The goal being to lower his resting heart rate out of the 130’s.

They reiterated that Gavin is dealing with an adult diagnosis and that very little is known about this on the pediatric side. 

Everything we are doing is basically guesswork, educated guesswork but guesswork nonetheless. 

This is a very complex situation and unfortunately, all we are able to do is chase the symptoms because there is no way to fix his brain (from an Autonomic standpoint). That’s incredibly frustrating to know that all we can do is address his symptoms. 



Right now, I’m feeling so overwhelmed that I can’t seem to focus on anything.  I’m extremely worried about Gavin and yet my hands are tied and I feel helpless to do anything, especially from a distance.

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My instinct is to get him back to the cardiologist for a check up.  He’s due anyways but this really isn’t a cardiac issue.  I mean part of it is, but it’s secondary to the autonomic dysfunction. That just means that while his heart is beating too fast, it’s not because of there being something wrong with his heart. 



Having said that, Gavin has been having chest pain for years and tests always come back that he’s fine. 

However, he’s not been back to the cardiologist since the autonomic stuff began last year.  It would be comforting to know that everything is still okay with his heart. 

He’s supposed to have an echo done every year around his birthday because on his biological fathers side of the family, there is a history of aortic ruptures at a very young age.  Gavin has never shown anything to be wrong, physically but is always dealing with chest pain. 

It’s time for a follow up.

After we begin the alpha blockers, we are supposed to check back in at the two week mark and let the Cleveland Clinic know what’s going on.

Hopefully, the new meds will help………


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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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Chefaimee
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Chefaimee

I have a question that I have asked before but perhaps got overlooked. Is his type of dysautonomia the type known as POTS or anything like it?

lostandtired
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Sorry if I missed your question before. He doesn’t have POTS. Gavin has a form of dysautonomia that they haven’t seen. He experiences autonomic crises when his whole system goes haywire. Very different from POTS, at least from what I understand.
While he can experience orthostatic issues while in crisis, his heart rate is not right, regardless of his physical orientation.
Does that make sense? Not sure how well I explained that.