Autonomic Crisis: Orthostatic Issues

We are at Akron Children’s Hospital and they got Gavin back right away.  During the trip Gavin’s heart rate went down. When checked during intake it was 102 bpm.

When we got to his room and they hooked him up to the monitor,  his heart rate stayed lower. 

The doctor came in and wanted to know what was going on.  The monitor was showing everything was okay. This is where we begin to feel stupid for making a big deal out of nothing.

However,  upon examination,  the doctor asked Gavin to sit up so he could grab some lung sounds.

The simple act of leaning forward,  caused Gavin’s heart rate to jump into the 130’s again.  The doctor layed him flat and it came back down.  This was basically a quick and dirty tilt test.  This showed that he has orthostatic issues.

In the pictures below,  you can see his heart rate when lying down and sitting up.  There is a pretty big difference.  The doctor told, Gavin to just lay flat and he was going to go call Cleveland and find out what they want done.

Gavin has to pee really bad but he’s not allowed to get up.  Say hello to the urinal and a really awkward couple of minutes.

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The hospital seems to be all over this right now and I’m incredibly grateful for that.

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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McGee

Have they mentioned anything about finding the route cause of these autonomic crisises?  The docs think my daughter is having autonomic crisis as well but they said that there is something else causing her body to shut down and turn on the autonomic switch.  And thats what they are searching to find out.  She has them every 30-45 days and the only thing that she does similar on those days is when she has Physical Education class that AND an Occupational Therapy appointment on the same day.  Also if she does a lot of spinning around in aftercare which she does a lot.  It will start like clockwork 15 minutes into her OT session.  Although this summer she did not have Physical Education class and we took a break from OT and she still had them.

lostandtired

@McGee they believe Gavin has an underlying mitochondrial disorder. Our specialist says that anything can trigger these crises. Gavin had a huge tantrum this morning and that may have contributed to this. However his heart rate has been elevated for days.

Dyhydration is another cause, although not the case with Gavin.

Feel free to contact me privately and I'll be happy to share whatever information I have, if it might help.

McGee

 @lostandtired  @McGee  Same with my daughter dehydration will also trigger a crisis as well as meltdown.  Some of my daughters signs that a crisis is beginning is she gets extremely pale to the point that her skin literally turns gray and her lips become the same color as her face (and she has naturally very red lips), she completely looses her bubbly personality and will only answer questions by  saying yes or no but cant really give you any details or she will shrug her shoulders (as if to say i dont know) alot when you ask her questions (these a very abnormal behaviors for her), her posture is very slumped over (again abnormal for her), her muscles are very tight, she starts sweating at her hairline and her upper lip and her heart rate spikes to 110.  Of course by the time I drive from her OT's office to the closest hospital which is 30 minutes away and they do a full blood pressure work up on her (standing up, sitting down, lying down) and do the basic neurologic exam on her (testing her motor and reflex responses) by the time all of that is done she's fine and I look like an overractive mother.  They always send her home.  I tell them this is not my daughter, thats is not her personality, you cant send me home when she has not retuned to her normal bubbly self.  But they tell because she passed the blood pressure work up and neuro exam theres nothing they can do for her.  One time they did a CT scan which came back normal.  
 
Now her neurologist has told me to call his cell phone next time this happens and rush her to his office no matter what time of the day and he will have his office staff meet me at the office and hook her up to an EEG to try to capture what is going on in her brain during all of this.  But his office is also 30 miles from my house. Right now we're at 40 day so it should be any day now…
 
 

elizabethlendrum202

Wow… I know this has to be super scary for you guys! Saying a prayer for Gavin, Lizzie, and the rest of the L&T clan! Praying that the doctors can resolve this quickly for him! 

lostandtired

@elizabethlendrum202 thanks a lot. I really appreciate it. 🙂

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