Gavin makes his triumphant return to the Cleveland Clinic next week

Something I’m don’t know if I’ve shared before is that has connective tissue problems. Apparently, his Mom has a connective tissue disorder but that was diagnosed after she left and so I’m relatively in the dark on that.

Gavin is extremely hyper flexible. Some of the things he can do are actually cringe worthy and hard to watch. 

I’ve known about that forever and that’s one reason why he was in OT/PT and is currently back on the waiting list.

   

The problem he’s been having recently is that his shoulders and hips pop out. It’s very painful and just sorta happens randomly. He could be running around and be just fine but he could have his shoulder or hip pop out while climbing out of bed in the morning. 

While I don’t believe there is really anything that can be done, he will be seen by the Pediatric at the next week.

These issues seem to be happening more often lately and it’s causing him distress. This appointment will help to ensure that everything that can be done is being done. At the very least, we can learn more about this problem and perhaps some things we can do to help him. 

I truly hate that he must endure as much as he does but I have to say that he takes each challenge in stride and never, ever complains.. He’s a super tough kid and I couldn’t be any prouder. That being said, if there’s anything I can do to make his life more comfortable for him, I want to know what it is so I can make it happen… 😀



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  • BarbWeaver

    Hi Rob,
    Just wanted you to know that has been having the same issue lately, so probably genetic.

  • EllenBeck

    If it is genetic,  ask Lizzie to share with Gavin’s doctor anything that might help him. She has an obligation as a parent to be forthright and should do it freely. I know you arent his biological father, so it is truly up to her to do this, and if you have to, please go to court and demand it. has a  right to know, as do you as long as you are his primary caretaker. Any info might help him later, as she might be getting treatment that will be of benefit to him.
    I betcha though some of Gavins ‘popping out’ has a lot to do with him growing (he sure has grown a lot this last year!) I have known severall people with this disorder and it was really unstable in the teen years. Luckily, they and their folks got good at popping things back in! 
    Hoping Gavin all the best!

  • eb89

    Not sure if this helps, but it sounds like you’re describing Ehlers-Danlos Syndrome, which is genetically inherited, and often mistaken for , so it makes sense if found out she actually has Ehlers-Danlos.
    It’s also pretty normal for kids around puberty age/in growth spurts to have occasional joint/connective tissue problems since the bones are growing, and this means the other tissues are adjusting as well…most kids get sprained ankles a few times, or other joints move out of alignment easier from injury or odd movements, so my fingers are crossed for it to just be normal growth spurt that maybe he will grow out of.

    Best of luck!

  • Gavin definitely has ehlers-danlos, as does him Mom. She was having the same issues as and had been for a very long time. There’s more to what she has though and it supposedly impacts in other ways as well.
    Hopefully I’ll get this figured out.

  • Michael Rivard

    VERY GOOD.