A couple weeks ago, over in General Questions, I posted this thread asking what specialist people thought my daughter should go to for some joint problems she’s having. I ended up taking her to a rhematologist last Thursday (1/14).
The rheumatologist seems to think she has Hyperflexibility Syndrome. He took some blood to make sure it’s not tied to any underlying problem, and he set her up for physical therapy. (Her eval visit is this week.) He also took a pelvic x-ray to make sure there’s no wearing damage from the popping in & out. She’s on Alieve (naproxen sodium) twice daily as pain relief/anti-inflammatory, also. We go back in about 4 weeks after she’s been doing her PT for a while.
I know I don’t post very often, and probably most of you don’t know who I am, but I wanted to get this out there for those who commented in GQ. I know I always like to see follow up posts on this sort of thing.
My daughter was diagnosed with Juvenile Rhematoid Arthritis and was put on Naproxen with physio for a few weeks.
Her leg remained stiff and could not bend or straighten completely.
I did not see enough benefit from it and demanded another solution - they brought her in and did an injection of anti-inflammatories directly into the joint.
She was able to walk and move normally within hours.
Just wanted to encourage you to push - if necessary
My daughter also is said to have a hyperflexibility issue. It never is a problem though, it is just comes up when she wants to gross somebody out (she can touch her thumb to her wrist going the back way (back of hand can bend back to wrist, if that helps you mentally see it)
What we DID find out is that she has a small problem with Juvenile Rhumatoid Arthritis. She takes nothing for it, but we have found that if she is too sedentary, she will have problems with her hips/knees/ankles. Whereas, if she just gets out there and DOES things (plays on the tennis team, or just generally works out regularly), the pain goes away.
She also was diagnosed (at the same time as the hyperflexibility), as having Crohn’s Disease. That was an issue for a year, and now it seems to have “disappeared”. I know, it doesn’t just go away, it goes dormant. I am just hoping that it stays dormant for the rest of her life! She hasn’t taken her medicines for the Crohn’s in a LONG time.
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My daughter is back in school today. She has texted me 4 times about the level of pain she’s in. She doesn’t start PT until tomorrow, and, having been through PT myself, she’s likely to hurt WORSE for a while until she gets used to it. (I haven’t told her this, though.) I have a call into the rheumatologist to see if we can get something stronger for nights, so she gets a decent night’s sleep (instead of waking in pain when she rolls over).
But there isn’t much that sucks more than a parent not being able to help a child in pain.