Thursday, May 22, 2014

PWS Awareness Day 22: Scoliosis

You know what's keeping me up at night?  It's not the food or the tantrums.  It's the darn scoliosis.

Almost a year ago now Oscar had a great appointment with Dr. Gray, our spine surgeon.  His 25 degree curve, though not ideal, was stable, and no additional intervention was needed.  No brace, no surgery.  We were on a good path.  Dr. Gray congratulated Oscar with a big smile, and reminded him that core exercise was essential.  He retold his favorite anecdote about the ballet dancers that he treats -- their curves always worsen when they get injured, and improve as soon as they can dance again.  "Row, play basketball, do pilates", he told Oscar, as he always did.

Oscar had been seeing Dr. Gray since he was three years old and the orthopedic surgeon at our local hospital had made me feel like an "hysterical mother" when I expressed disbelief about the fifteen degree jump in Oscar's curve in a four month period.  He completely dismissed me when I mentioned my concern about Oscar's weak muscles ever strengthening if I agreed to the recommended 23 hours per day brace. And when I inquired about intense core strengthening as a way to stabilize the scoliosis, he just shook his head, and sent his nurse in to make the appointment for bracing.  I wasn't going to keep taking Oscar to a doctor who treated me that way -- we switched immediately to Dr. Gray.  Many of the families in our support group were already seeing him.  He was not alarmist, and he believed in the importance of core strengthening.  And Dr. Gray also knew how to use a protractor -- Oscar's curve hadn't even actually increased -- our original doctor had mismeasured!

Ten years have passed and I still sound bitter, don't I?   This whole story came rushing back yesterday when Oscar's endocrinologist closed the examining room door and asked my honest opinion about the first orthopedic surgeon.  She has patients who need referrals and wasn't sure who to recommend. I didn't hold back -- I gave her all the details and strongly suggested she not refer patients there.  There's more (including the botched surgery of a boy we knew) but I won't go into all of that.

Dr. Gray retired in March, and he squeezed Oscar into his schedule on his last day in the office.  It had been 9.5 months since we'd seen him, and the curve had worsened.   And I know why.  We'd fallen off on our the core exercise regime.  Our rowing machine had broken, we'd moved and were (are) in the middle of a remodel.  Paul was busy with work and I'd been diverting energy into writing, and other pursuits. 

Yesterday morning, when Oscar was standing naked in front of the mirror with those cleansing pads I could really see that "S" curve clearly.  Twenty-nine degrees on top, twenty-five degrees on the bottom.  His right leg is slightly longer so that hip is higher.  We lost the lift we used to put in his left shoe to try to even things out.  I still hadn't called to make an appointment with the spine surgeon that Dr. Gray recommended.  And when I did call yesterday morning I got caught up in a referral process that required the medical records I'd forgotten to request.  It will be another few weeks, at least, before we get the appointment, another few after that, I'm guessing, before we can get him into a brace. I'm wondering how much that curve will worsen in that time frame. And is bracing even the right way to go?

In the meantime we've heard about an alternative method to correcting scoliosis that involves a three dimensional exercise approach.  There is a practitioner about an hour away, in the opposite direction of the spine specialist. I don't even know yet what their wait time is, or how many appointments would be necessary.  Could we do the exercises from home?

"We've got to figure out how to make this a priority," I said to Paul last night.  Oscar has to use the rowing machine more consistently.  And we have to figure out which approach to take.  We have to inject the same energy into managing his scoliosis that we did into getting him on growth hormone when he was a baby, into figuring out his GI issues last fall when he was plagued with stomach aches, into making sure we maintain his food security.

I've written this before, but raising a kid with special needs is sometimes a bit of a triage situation. We can't tackle everything at once.  We have to identify priorities, and recognize that some things will just not get done.  Right now we have to focus on scoliosis.  (And please don't ask me about sleep studies, orthodontics, or excessive daytime sleepiness.)

Oscar using the rowing machine -- we fit it in on the weekends. It's the weekdays that are tricky.


3 comments:

  1. Wow, Mary. I don't know how you handle it all, and I can see how things like this slip by the wayside...I can't even manage to help my kids study for spelling or remember to take their stuff to school when baseball season starts to throw our schedules out of whack. I can't even imagine adding in moving, remodeling, and managing special needs. You're awesome and I know you'll find the best way to manage this. Good luck!

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  2. Thank you Andrea. We just do what we need to, right? I laughed when I read this though -- when I saw Kate last we were marveling over how YOU do everything you do, and so masterfully.

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