Read more about the article @AkronChildrens Hospital called with a date for the procedure
Akron Children's Hospital / Autonomic Disorder / Gastroenterology / Gavin / My thoughts

@AkronChildrens Hospital called with a date for the procedure

I spoke last week about how Gavin is in need of an endoscopy and colonoscopy because of various potential health related problems in those areas. They needed to run labs to make sure that it would be safe for Gavin to have the procedures because Neutrophilia puts him at a much higher risk of infection. His labs came back and everything looked good. Now it was a matter of scheduling everything and waiting on the call to do so. I just got off the phone and we now have two dates. The first one is for pre-testing and that's with a nurse practitioner. My understanding is that we will basically go over everything and make a final determination as to whether or not it's safe to proceed with the procedures.…

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May 16, 2018
Read more about the article Fingers crossed and prayers sent
Akron Children's Hospital / Autonomic Disorder / Gastroenterology / Gavin / My thoughts

Fingers crossed and prayers sent

This is take two for this post cause the first one glitched out and disappeared. I'm gonna try to reproduce it as best I can. I played phone tag with Akron Children's Hospital today. I called this morning to get the results of Gavin's labs from last week and it turns out, they never received the results. We went back and forth a couple times but finally connected in the late afternoon. The nurse had managed to get the results and it turns out Gavin's labs came back normal. I love hearing those words in the same sentence when referring to Gavin. That was good news and it meant that we could move forward with his endoscopy. She went over the intake questions and when we hit the one about…

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May 11, 2018
Read more about the article Gavin was absolutely miserable tonight
Autonomic Disorder / Gavin / My thoughts

Gavin was absolutely miserable tonight

Tonight was not good to Gavin. Poor Gavin got sick after dinner and was absolutely miserable until he finally fell asleep. Shortly after eating dinner, he got what he describes as a really bad stomachache. Tums seem to have helped with that rather quickly but it was the headache that kept him up last night. I'm beginning to suspect that when he has these episodes, they are mini autonomic crises. The reason I say that is because they always happen after eating, when his blood rushes to his stomach. That can and does cause his blood pressure to destabilize, leading to a headache. That's actually how we first discovered there was a problem in the first place. When he lays down, he often feels better. This happens a few times…

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December 26, 2017
Read more about the article Sometimes it’s the little things
Autonomic Disorder / Gavin / My thoughts

Sometimes it’s the little things

This past week has been a rougher one for Mr. Gavin. For some reason, he's been dealing with bouts of nausea. Some of these bouts have been worse than others but they seem to mostly happen at night. Thankfully though, the last couple of nights have been good for him. I don't think he's had an issue since Thursday night. You might be asking yourself, why is Gavin being nauseated such a big deal? The problem isn't so much the nausea itself but rather the vomiting that can occur as a result. Gavin has a very serious Autonomic disorder that has come close to killing him on a few occasions. Basically, his brain stops controlling involuntary functions like blood pressure, body temperature and heart rate. When this happens, he goes…

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November 12, 2017
Read more about the article My heart breaks for Gavin tonight
Autonomic Disorder / Gavin / My thoughts

My heart breaks for Gavin tonight

For the second night in a row, Gavin is going to bed sick to his stomach. I'm not sure what's going on but it was so bad that he went to bed before 6:00 PM. I don't think he's actually sick sick but it might be autonomic in nature. These could be mini to moderate crises. They aren't anything that will send him to the hospital but it's enough to knock him off his feet. When these things come around, the absolute best thing he can do is go to sleep. Going to sleep helps his body to stabilize and when he wakes up, he's usually better. We haven't seen anything like this in awhile and I could totally be wrong but the symptoms do fit. If he were to…

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November 7, 2017
Read more about the article How Gavin’s appointment went and why I’m so overwhelmed
Autonomic Disorder / Cleveland Clinic / Gavin / My thoughts / Pediatric Neurology

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. [foogallery id="65530"] 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…

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September 13, 2017
Read more about the article New concerns with Gavin’s health have us worried
Autonomic Disorder / Gavin / My thoughts

New concerns with Gavin’s health have us worried

We're heading into a rough weekend. I need to catch you up on a few things I didn't get around to yesterday.  The most concerning issue at the moment is that Gavin wasn't feeling well while at his Grandma's house, and ended up vomiting. The question is whether or not he's actually sick. I tend to think he isn't sick, and here's why.  Gavin will over-eat if he's not very closely monitored. I suspect that he ate too much and ended up with a tummy ache.  Historically, if Gavin even thinks he's going to vomit, he'll get himself all worked up, and end up vomiting, even if he didn't need to. He gets it stuck in his head and inadvertently ends up making himself vomit. We've seen this countless times. …

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June 3, 2017
Read more about the article Gavin’s had a really rough day
Autonomic Disorder / Gavin

Gavin’s had a really rough day

Gavin's had a tough day and probably not for the reasons you're thinking. Behaviorally, Gavin's been an angel for the most part and we couldn't ask for more.  Unfortunately, the things that have been a problem today are more health related. Gavin's had stomach aches, on and off all day long.  There's nothing that seems to be an obvious cause but he was definitely hurting. About mid-afternoon, we went to visit my Grandmother.  She lives about 90 minutes away and at the time, Gavin was doing fine.  He was excited about going and said that he felt fine.  If he hadn't, I wouldn't have suggested making the trip. A few minutes before we left, Gavin approached me like he was a secret agent and sought permission for his friends to…

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August 2, 2016