Our Adventure Evolves…

Sitting here at O-dark thirty (actually, O-dark forty five…) digging for information and worrying.  Our adventure evolves and I try to deal and come to terms with it.  Sometimes it is even less easy than “just” dealing with the epilepsy.

Now that school is out, we are catching up with the whole set of doctors thing that was either scheduled for now, or that we have put off because dealing with it during school would have meant significantly more time off from school that we couldn’t afford.  We have urologist appointments and neurologist appointments and we are adding in orthopedist appointments.  Squirrel girl’s knee has bothered her for a significant part of the last couple years.  She has a major aversion to more doctors (wonder why) and hadn’t been having TOO many problems with her knee over a lot of the time.

The story?  Sure…

2009, summer… We went to Star Wars Weekends at Disney World.  Much fun but both she and I managed to have our own kind of troubles at the time.  I was having weird pain in my feet (which turned out to be RA cluing me in to the fact that it was there) and she started to have issues with her knee.  She was scheduled to go to NJROTC boot camp right after the trip (RIGHT after… we got off the plane and drove 3 hours at the top of the speed limit to drop her off).  She wouldn’t hear of not going to boot camp so we scheduled the orthopedist appointment for when she got home.

They told her to take it easy and stay off of it for a couple weeks and gave her crutches.  Her PCP had  MRI done and they said it was Osteochondritis Dissicans.  The orthopedist seemed to think that it was overuse (I’ve recently read his notes and I am LIVID with what he said in them)… no therapy… a pair of crutches that we had to ask for and a gentle suggestion that she try to stay off of it (over the summer when she was a very active 14 year old… really).

Her knee started to bother her a little less… so she started to pay less attention to the suggestions of taking it easy, and the orthopedist released her to do whatever she wanted.  So she started back up with the athletic team and took back up running the mile relay and the obstacle course.  She had been a very very active kid anyway so when it appeared to be healing it wasn’t such a leap to go back to who she was.  She pushed too hard (she is MINE after all… we tend to be stubbornly determined) sometimes… okay, a lot of the time.   When she had the chance to do the competitive NJROTC mile relay (she really is an awesome runner) at the September drill meet, she was elated.  So she ran it.  And she made it 2/3 of the race and her knee locked and I had to help carry her off the track.

She rested it some more and took it WAY easier for a couple weeks and it seemed to be better… mostly…

It has ached funny over the intervening time.  It has given her some problems when she spends an inordinate amount of time on her feet, or pushed hard in physical training in NJROTC.  But it didn’t bother her a whole awful lot NSAIDS tended to help… and ice.

The last several months it has been giving her a lot more problems.  It’s been swelling and popping and locking on her and I’ve been telling her that she needs to go back to the orthopedist.  She has been kicking and screaming (not literally) about not wanting too because she has been pretty sure it is going to mean surgery.  I had my doubts about that but I let her rail about worst case.  I have her sweety boy on my side, he has been telling her she needs to go too.  So she caved and went with only a little grousing…

Tuesday we went to the orthopedist.  He took more x-rays and poked and bent and prodded and gently touched… and said yes she has osteochondritis dissicans (not just a wee bit of over use… really?  really really?  wow… no kidding) and Wednesday she had an MRI to determine what stage it is and if the bone chunks have broken off and are floating around in the cartilage.  He is trying to figure out the best treatment, not the diagnosis.  That is apparently a forgone conclusion… go figure…

What is it?

Wikipedia defines it like this…

“a joint disorder in which cracks form in the articular cartilage and the underlying subchondral bone.[1] OCD is caused by blood deprivation in the subchondral bone. This loss of blood flow causes the subchondral bone to die in a process called avascular necrosis. The bone is then reabsorbed by the body, leaving the articular cartilage it supported prone to damage. The result is fragmentation (dissection) of both cartilage and bone, and the free movement of these osteochondral fragments within the joint space, causing pain and further damage.”

The definition scares me.  I’m worried that it really will mean surgery, and we have pretty much decided it probably will.  Her knee is pretty much swelled most of the time and causes her a good bit of pain.

The orthopedist wouldn’t give her anything big to cut the pain, even though he wanted to give her Vicodin because it has to be hurting her so much, until we got sign off from the neurologist.  I talked to Theresa in his office (he is out of town) and she said yeah she can take it, it won’t affect the efficacy of what she is taking for epilepsy… so we have added pretty stiff pain meds to our cabinet… our house is starting to vaguely resemble a pharmacy… and we have to check and double check to make sure what kid (or adult…) gets which pills so the wrong ones don’t go to the wrong peeps.

So far her new mix hasn’t triggered anything and we are still seizure free.  I’m really worried about what surgery will do to the seizure deal… Not knowing her triggers, I don’t want surgery to trigger anything, especially during surgery… but I tend to worry over everything….

I’m at least happy that the orthopedist seems to be taking everything seriously and not brushing her off or acting like she is a loon.  He is talking with us and more important, he is listening.


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