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Food for thought..


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Mentioned it because I have (or at least had) hypermobility, and my hips popped too. My left shoulder still does it. Pregnancy was tricky with those extra flexibility hormones on top of my usual loose joints...sometimes my hips would just go out of joint and buckle under me all of a sudden, particulary on the stairs. I walked around with a cane for a little while in there with my second! It's also the reason I had to have a C-section with my second, which was when it was its worst. The OB said that my ligaments and whatnot were so loose - and my baby so large (that one takes after my husbands' side) that if I gave birth to him full-term, it would take 6 months for my hips to knit back together and I'd need to use a walker in the mean time...so they took him out 3 weeks early, already well over 8 pounds (and I'm small).

 

Ds7 and I both got droopy eyelids (just one) during exacerbations. Neither of us has stretchy skin, though.

 

I was helped a lot by a good physical therapist. He gave me exercises (weights) to do to stabilize my joints and as long as I kept up with those, they really worked. I was unable to run for a while, but once my joints got stabilized with the weight lifting I was told it would be a good thing to run... and I still run and lift now. You're probably tired of tracking down and seeing doctors, but if you have any "ins" to a really good PT, I would highly recommend it.

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The droopy eyelid has ALWAYS bothered me. It's really noticeable.. I don't wanna be like "It's from Hypermobility Joint Syndrome" just from reading this, but that's always been one thing that no one can explain that bothers me a whole, whole lot..

 

Are there good & bad physical therapists?? Adding one more doctor to my list wouldn't be too terrible of a chore. I 'm already looking into seeing one for the Dystonia in my shoulders, so I'll be sure to at least mention all of this too. :)

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Hi Emerson,

First of all...you are awesome! Thank you so much for sharing your insights. I have two boys with PANDAS (ds5, ds7). My husband feels absolutely certain he had PANDAS as a child, and from hearing stories from his mom, I don't doubt it for a minute. He still has OCD, and honestly he won't tell me the extent to how much it affects him because he said if he talks about it, it makes it worse. I do know he has to touch things twice, he also charts his workouts obsessively (if I want to know what he did on February 20, 1999, I could look it up), I won't even go into our extensive monthly budget spreadsheets (again, if I want to know how much I spent on groceries and where I bought them for the month of April 2001, I could look it up), and I know he has to look at some things a certain amount of time, turn his head and repeat. I honestly don't see him doing this much because he is extremely good at hiding it, and functions completely well at work as an engineering manager. At any rate, he is a math whiz...he has his masters in electrical engineering. Extremely complex problems are easy for him, but simple math--2+2 dividing simple numbers always seems to throw him for a loop. We always laugh it off, but I never realized it may be part of PANDAS in some way. I don't know, but it sounds very similar. I am going to tell him about your post. :) I think I probably had PANDAS as a child too--more ADHD things, but also some OCD.

Lara M

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  • 3 years later...

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