What the hell happened yesterday?

      3 Comments on What the hell happened yesterday?

While it’s a bit overdue, I wanted to share what happened when we met with Dr. Clark yesterday at Akron Children’s Hospital.

Basically, our purpose is going was to find out if the fact that Gavin’s brain is improperly controlling his heart, has a negative impact on his heart itself. 

Does that make sense?

We have been worried by his rapid heartrate and didn’t really know whether this was bad for his actual heart or not. 



So what did we find out?

Put simply, Gavin’s heart is physiologically fine and while the numbers are high, they aren’t adversely impacting his heart health.  Basically, as far as his physical hearts concerned, we can ignore the numbers, at least for now.

His heart rate is more of an indication as to his current autonomic status and not the actual condition of his heart.

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That was basically, the long and short of it. 

I mean, there were tons of things in between but that’s the meat and potatoes of the conversation. 

We learned that over the 24 hour period of time that Gavin  was wearing the Holter Monitor, his average heart rate was about 107/bpm.  He explained that the reason that’s lower than what we see is because takes into account when he sleeps. 

During the day we see his heart rate in the 120’s – 130’s very consistently. 

However, when you factor in what his heart rate is while he’s sleeping, the average is only 107/bpm and nothing to worry about.  🙂

We talked about (what we already knew) how his heart issues are a symptom of something else (in this case autonomic dysfunction). Essentially, the heart is doing what it’s told to do and that’s all. 

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Dr.  Clark didn’t want to make any changes because of how complex Gavin is.  He is however, sending a letter to the Cleveland Clinic, advising them of his findings and providing some heart related things to consider if they feel it’s necessary.  Since this is truly a neurological problem, it really falls outside of his area of expertise and he deferred Dr. Moodley at the Cleveland Clinic.

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Having said that, Dr. Clark was a huge, huge help to us because he was able to provide us with something we haven’t had in a long time, peace of mind.

He will always be there if we need him again and I believe we are going to have regular followups with cardiology to track things very carefully to make sure that Gavin’s heart health stays good. 

While we still have to watch his numbers as they are an indication of his current autonomic status, we no longer have to worry about whether or not his physical heart is being damaged in the process, at least for now.

One less thing to worry about, now that’s a victory.  🙂


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  • lostandtired says:

    rmagliozzi AMDuser thanks everyone.  I really appreciate your support.  🙂

  • rmagliozzi says:

    Phew. I’m glad his heart is okay, and you finally can get some piece of mind. I’m still praying some reason will be uncovered as to why Gavin has all these problems in the first place.

  • AMDuser says:

    For the heart Gavin is still young and can easily handle it.