Life should come with instructions

      7 Comments on Life should come with instructions

I’m so frustrated right now because I don’t know what we are supposed to do with Gavin. He’s showing the very same signs and symptoms that ended him up in the hospital,  twice in the last 30 days.

There are no instructions or standing orders as far as an autonomic crisis,  partly because they are so uncommon.

This evening Gavin has presented with blurry vision and chest pain.

I have him on a heart rate monitor, so we can have a real time gauge of where it’s sitting at.  In the past hour, Gavin resting heart rate has increased to about 107 bpm,  up from about 90 bpm.



When he stands up,  his heart rate jumps up about 20 bpm.

This is not necessarily a reason to go to the hospital but the fact that the baseline is climbing is worrisome for us.  Plus,  when he stands up he gets a headache. As far as I know,  that’s something new.

When I was a paramedic,  we had standing orders.  Standing orders were a set of instructions on how to handle most conceivable medical emergencies.  If I ever found myself in a situation that was outside of my standing orders,  I would call medical control and receive instructions as to what I should do. 

Unfortunately,  I find myself in a similar situation, only this time I have no medical control because there isn’t a whole lot known about autonomic disorders. 

The only thing going we can do is stay home or go to the hospital

That may seem like and easy choice but in reality,  it’s anything but. The hospital is about 20-30 minutes away.  We also have to have someone for the other boys, which isn’t easy.  Even if we come home within a few hours,  everyone is thrown off and overstimulated.

If we end up having to stay,  which is what has happened the last couple of times,  that throws chaos into mix as well. 

Making the choice to stay home or go to the hospital can have a domino affect of the entire family,  including Gavin. We don’t want to put him through needless blood work and testing of it’s not necessary. The poor kid goes through way to much as it is. 

So…My conclusion is that I need an instruction manual for this whole autonomic disorder crap.  Something that says,  if A,  B, C or D happens,  take him to the hospital.

Life would be so much easier if it came with instructions……

**Thanks for reading**

       -Lost and Tired

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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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jol
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jol

does he have POTS? Postural Orthostatic Tachycardic Syndrome? Sounds very much like it to me. I've had a few patients who have had this. http://podcasts.mayoclinic.org/2008/04/23/postura

Rob Gorski
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He doesn't have POTS, they know that. However, they don't know for sure what it is. There are multiple systems affected and there doesn't seem to be a rhyme or reason. They did rule out POTS a little while ago. He is also physically incapable of sweating.

Rachel
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Rachel

Rob, my kids are younger than Gavin (they're 5 and almost 3) but they both have autonomic dysfunction, as do I, and my son and I seem to have POTS, specifically. My son and I were both just diagnosed with a mitochondrial disorder. Please email me if you want to talk or want any other information- I deal with this too, and I know the frustration of not knowing when to pull the trigger and go to the hospital. (I'm a former pediatric nurse, now disabled, so I know the feeling of wanting some concrete guidelines and not getting any.)… Read more »

Rob Gorski
Admin

They think Lizze has autonomic dysfunction as well. She goes in for a full work up in August. It's also believed that Gavin has some type of mitochondrial disorder as well. Luckily the leading international expert calls Akron Children's Hospital his home. He's our next stop.

I would love to chat about this because, not many people, including ER staff are familiar with this.

nan
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nan

It's my understanding that it's not safe to abruptly stop blood pressure medication. Withdrawal symptoms include chest pain and irregular heartbeat and could include blurry vision as well. You need to ease out of any kind of blood pressure medication or, from what I've read, it could be very hard on your heart. I'm wondering if Gavin is reacting to not having his meds this weekend?

Rob Gorski
Admin

You would be correct accept that this is not really a blood pressure medication per say. What it does is cause him to retain water, thus bolstering his volume to help prevent his pressure from crashing. No side effects to stopping, it just doesn\’t work ifbhe doesn\’t take it.

Cindy Wolf
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Cindy Wolf

My Chris doesn't sweat either, and we've long suspected a mito disorder, but can't prove it. His endocrinologist found that many of his issues are in the hypothalamus. It's not sending the right hormonal signals to the rest of his brain and body to cue things like sleep, sweat, and more.