And the Expert Says What?

So yeah. There's either Ehlers Danlos going on or some other connective tissue disorder. We finally saw a physiatrist, which there's no peds here so we're in adult medicine. Fortunately, we got lucky and they were excellent.

However, they're referring us elsewhere as we came in sideways to that department via peds and they aren't the right people. But they seem committed to making sure we end up in a good place. We'll see.

It sounds like mostly they want her to have better knee braces than what she has. And possibly PT for the rest of time. My kid will pass on to glory someday (hopefully a long, long time from now) and will spend her afterlife doing PT. Like, they'll meet her at the gates with resistance bands. She's never going to escape. Ever.

Unfortunately, this doesn't fix some of the other stuff that's decided to act up, but for the first time I feel like we've had an actual topic expert go 'yeah, we know this, it's EDS or similar, definitely braces, more PT, maybe genetics.'

So yeah. My kid has the trendy TikTok diagnosis. For real. Blurgh. Dealing with the pop culture drama around that is going to be unpleasant. (And I will note she hates social media and thinks it's super lame. You won't see her dancing on TikTok.)

Also, it was hard to watch them mess with her joints. They took her joints in directions that aren't supposed to be possible. The laxity is...extreme. I'm a loser because I get icked out. I can't watch.

And the whole thing is odd because you'd think hypermobility would be associated with gymnast type flexibility, but these patients keep their muscles winched tight to support their joints. So yes, they are super flexible in many ways, but also super tight in different places as well. Their bodies are just desperately trying to hold on so they don't lose any Lego pieces.

The appointment confirmed we're barking up the correct tree for realsies, but it was also really painful. The manipulations they did really messed her up and it's finals week for her college math class. She had a test and then a final immediately after. She managed to pull off an A, but she was in tears waiting for her body to calm down. We did heat, massage, Advil, Tylenol, vitamins...nothing helped. Her muscles just seized up and wouldn't let go. I felt so bad for her. Nothing worse than not being able to help your kid...

As for me and my joints, my knee is still acting up and was making a fuss during this appointment. Ha. Someone in a wheelchair asked for help at the hospital door, so I helped wheel them in and down a long ass incline. Then we got lost and walked the entire campus. Even the staff didn't know where we supposed to go. We kept stopping and asking and no one knew. Finally the police pointed us in the right direction. 

My knee, which had been feeling okay, absolutely hated every bit of that. It feels like I've dislocated it again, but I didn't. My teen is walking better than me right now, which is saying something. I didn't know my knee was that bad off until it was too late or I would've found someone else to help.

I don't know, man. All we can do is limp along, literally and figuratively. Hopefully better days are ahead for the teen. Hopefully my knee stops the bullshit. All I can say is we are trying as hard as we can to get somewhere better. It sucks how much of a slog it's been.