Thursday, January 23, 2014

Trouble with the Curve: A Tale of Scoliosis

Evie has scoliosis. I noticed it when she was about 9 months old (summer 2011). I thought I was losing my mind when I started seeing that tiny bulge in her back appear. I kept asking others if they saw it too. Much to my dismay, they didn't really "see" it or didn't think it was a big issue at the time (in all honesty we had so many concerns I can see where this one might have slipped into the low priority category). I wasn't satisfied. I kept asking at every appointment with every doctor regardless of speciality. Finally, while she was being evaluated for Early Intervention the physical therapist looked at me and asked, "Has she been checked for scoliosis?" I almost burst into tears because she had the same feeling I had and I wasn't going crazy.

Fast forward to November 2013 (yep, it has taken me that long to sit down and write about this) and that small bulge is creating a lot of buzz. It is no longer small. It grew…a LOT!!! What started as an innocent 8 degree curve went to about 18-20 degrees in 2012 and then 40-45 in 2013. All color drained from my face when I saw her x-ray (I also had an uncensored moment complete with explatives). I knew what it meant and what decisions we may be faced with in the near future. Before that point I was hopeful, but my gut knew. It seems my gut always knows.

Evie was fitted for a brace which is supposed to worn at night. We call it her little turtle shell (not very original, I know). She was a trooper when we met with Mr. Bob for her cast and fitting. The first week went perfectly without incident. The tides have changed and now she is becoming more agitated by her turtle shell. Some night she wakes up crying and the only thing that will soothe her is the removal of her brace. On nights she is battling severe, body shaking coughs I don't agitate her further by constricting her chest and mobility. These are occasional events though and the majority of the time she wears her shell. We started taking her shell to school so she can wear it while in her stander…it can't hurt.

Mr. Bob showing me an example of a brace.
Prepping her for the casting.
Making the cast. This was a bit messy.
After Mr. Bob made the cast, he drew a smiley face on it.
Her completed shell. You can tell she isn't thrilled.
Mr. Bob was able to match the brace to her current AFO's.

However, I don't believe it is helping (but since I don't have x-ray vision I can't be sure). We have to wait until next Tuesday (Jan 28th) to know for sure. I hate waiting. I lift her from her activity chair and I can see the curve. I look at her sitting on the couch and I can see the curve. I lay her down in her bath chair and I can see the curve. It shows up everywhere. It terrifies me. The prospect of an eventual surgery twists my stomach into a giant ball of knots.

I wanted to pursue some alternative treatments, but due to insurance caps, financial restraints, and chiropractic adjustments being lumped in with all of her therapies (speech/feeding, physical, occupational) it just isn't feasible right now. We get 35 visits total! That's it folks. Unfortunately, that is the case for many people. So, we have to make a decision between pursuing speech/feeding (not currently receiving at school) and chiropractic adjustments to help her curve. Both are important and have life altering impact (speech will help us move closer to an eye gaze communication device). Which way do we go? What if we make the wrong choice?

Another beneficial item for her scoliosis is a stander (a type of medical equipment that helps improve posture and function). But this has turned into my own personal holy grail and is a story for another post.

Image of a MyGo Stander by Leckey.

Ultimately, only time will tell if we made the right decision. We are waiting for next weeks x-rays before we set our course, but I'm leaning towards keeping speech/feeding therapy intact. But what if I'm wrong...

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