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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  • rmagliozzi says:

    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.

  • Chefaimee says:

    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 to even admit, but I actually had to sleep in pull ups and keep a trash can beside my bed because I couldn’t make it the 20 steps to the litter box in time. Just an idea….. And an embarrassing anecdote…..

    • lostandtired says:

      @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.  🙂

  • KathyBrower says:

    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 says:

      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……..

  • andrewbromley says:

    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 bad abdominal cramps and today my bladder feels as if it is the size of a walnut. Liquid goes straight through me. As for my bowels the story is similar but not as bad.
    I went to a doc about this back in 2002. He called it ‘motility innervation’. Something to do with the bladder/bowel sending a message to the brain when full. The brain sends a message back to open them but the nerve signals in the brain-the return route are disconnected, either at the brain end or the organ end, not sure which. This is where he lost me. I didn’t ask him how the organs open if the message doesn’t get back. Nevertheless when pressure builds, things happen.
    I hope these insights help somewhat. Signals I needed to ‘go’ were heightened emotion usually anger or irritability. Interestingly though I never wet the bed, just soiled my pants which I grew out of by 14. Thoughts of missing out matured and were replaced by the realisation a visit to the loo was more important. At high school though because of bullies I had to wait till I got home. So it may pay to watch out for the changes in behaviour if Gavin seems to improve but then things go downhill when he goes through the trauma of the teen years. One other thing, he may not tell you when others are hurting him. I kept this from my parents for two reasons; I couldn’t find the words to tell them without emoting what was happening and I didn’t want them to blame me for getting into trouble, when it was trouble that was following me.
    It is heartening to see that Gavin has a family that loves, supports and understands his needs. He will need it when he gets older. The positive environment he is growing up in though will see positive neuronal growth which will make connections with which will promote learning. At least this is what I have learnt from my research into my condition.
    All the best
    Andrew