How Gavin’s appointment went and why I’m so overwhelmed

We were gone for most of the day and it was an exhausting day at that. I want to start by thanking my Mom for helping out with the boys yesterday. We truly appreciate it.

There was a lot of construction on the way to Cleveland but the drive was only about one hour and twenty minutes. The trip home was a bit longer but not too much. There were some idiot drivers out there and one major accident but the trip was relatively smooth. ☺

We were headed to Cleveland in order to meet with Gavin’s neurologist, in regards to his autonomic dysfunction.

There was a great deal discussed and autonomically speaking, he’s very happy with Gavin’s stability. It’s been about three years since his last major crisis and that’s a blessing. This is likely the result of pulling Gavin out of school and putting our entire focus on his health/wellbeing. He hasn’t had a crisis that required him to be hospitalized since that decision was made.

That’s where the good news ends and things we’re going to end up worrying about begins.

Gavin’s specialist at the Cleveland Clinic quite literally wrote the book on autonomic dysfunction. We learned that because he gave us a copy of the newest chapter that addresses some recent changes to how autonomic dysfunction is treated.

For starters, Gavin’s daily water intake is increasing by 500 ml/day.

His doctor is also increasing his sodium intake my two grams per day. That amounts to three salt tabs, twice a day, or six grams.

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He also thinks Gavin has Ehlers Danlos, which isn’t a huge surprise to us at all. We were pretty sure that was the case anyway. It’s genetic and Lizze was diagnosed a few years ago. Elliott and Emmett are probably on that same train ride as well.

Apparently, there’s a connection between Ehlers Danlos and autonomic dysfunction. I didn’t know that, but it’s actually part of the updated information about autonomic dysfunction he just finished writing about.

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  • Becky Wiren says:

    At least you are doing something by taking Gavin to doctors/health pros. And it’s all you can do.

  • Becky Wiren says:

    At least you are doing something by taking Gavin to doctors/health pros. And it’s all you can do.