More pieces to the mysterious puzzle



Lizze discovered that Gavin is losing control over his bladder.  We’re finding his clothes and they are soiled.  I’m not sure exactly when this is happening or why.

My guess is that this is tied to the autonomic dysfunction.

Bladder control can be affected by autonomic dysfunction and he has had troubles with this, even before he went to stay with Lizze’s parents.  While they never said anything about this being a problem while at their house, I can’t imagine how it wasn’t. 

I expect to hear from Gavin’s autonomic specialist at the Cleveland Clinic early this week.  I’ll be sure to let them know what we are finding. 



In the past, this has happened at night.  However, Gavin’s never had this type of problem before, so this wouldn’t be considered typical for him. 

Hopefully, we can figure something and provide him with some relief, if that’s even possible. This is really sad and I truly hope we can help him. 

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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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rmagliozzilostandtiredChefaimeeKathyBrowerandrewbromley Recent comment authors

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andrewbromley
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andrewbromley

Hi Rob, Cetainly a sensitive topic. I can relate to this. When I was about eight I began to have the same problems. I would cross my legs and hold it in. In my mind going to the loo was a waste of time. I was worried I would miss something someone said or did. Looking back this was my brain trying to make connections and learn associations so I could socialize and learn these associations. But on the physical side it would hurt too much to pass anything, which is why I began to hold on. I had really… Read more »

lostandtired
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andrewbromley thank you for sharing so openly and honestly.  I really appreciate your insight.  🙂

KathyBrower
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KathyBrower

Ask theediatrician for a KUB X-ray to see if constation is an issue. He is old enough where he is probably not going to want to talk about stuff like that, but it can cause pee accidents that are completely beyond the kid’s control. I rea
I’ve it may very well be an autonomic issue, but it would be nice to have a simple explanation for once.
Also, when was the last time he had an EEG? My oldest only has accidents when he has seizures.

lostandtired
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KathyBrower that’s something I hadn’t thought of in awhile.  I almost forgot he has epilepsy…… I remember having that checked out and the neurologist didn’t think the seizures were impacting his bladder.  
The simple answer would be autonomic. However, if that’s the case, I’m not sure we can do anything for him……..

Chefaimee
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Chefaimee

This may sound odd (and as you know I have Dysautonomia also, just a different type), but do any of his medications affect his blood sugar? When I was on steroids, for example, my diabetes was exacerbated. I know that’s an obvious example? But I also know that a lot of meds can mess with blood glucose levels, as can weight changes. Now that I’m down 100# it’s not as bad, but whenever I would stand up (out of the car, out of bed, etc) I would totally wet my pants. At the age of 42. This is really humiliating… Read more »

lostandtired
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@Chefaimee that was super honest.  Thank you.  🙂  I know his sugar is okay or at least has always been okay in the past. None of his meds should be causing this.  
Much respect and deepest thanks.  🙂

rmagliozzi
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rmagliozzi

My youngest PANDAS kiddo has this problem when he has autoimmune flare ups. I often have to force him to go regularly or on schedule. It’s gotten better  but we still have issues. It wouldn’t hurt to take him in and have him checked for kidney function and possible bladder infection.