Tuesday, February 21, 2012

8 Degrees

My gut was right again. I'm starting to get really tired of being right, which is a big deal coming from a family of Germans who are "always right." I think, more than anything, I'm getting tired of being right about the bad stuff. I was right about Rae's physical development being off (Hypotonia), I was right about her having Infantile Scoliosis, and now I was right about our follow-up not baring good news. I've been right about equally upsetting things recently as well, but that's a whole other story.

Yesterday, Rae had her follow-up visit with Dr. S, her Orthopedist, and I would have loved to come home and report that her Infantile Scoliosis was maintaining or regressing below the initial 20 degrees that was reflected in her x-rays last September. However, that is not the case. The "C" curve has increased by 8 degrees with a +/- 5 degree margin of error. In which I find no comfort. Now, I know that doesn't sound like much, but when your looking at a condition that slowly progresses with time and more rapidly with every growth spurt and your child is only 17 months old...well that's just a tad bit upsetting.

To make matters worse, information my husband and I have read doesn't offer a positive spin on the less invasive forms of "treatments" for scoliosis. This has been reinforced by Dr. S, who didn't feel like the options available would be of any true benefit, but he's open to suggestions or, if we press it, placing Rae in a brace and/or authorizing more therapy. We also have to consider the effect a brace could potentially have on Rae's physical development in relation to her Hypotonia. If the brace keeps her straight and holds her in place then her muscles wouldn't have to work and would not become stronger. It's a double edged sword. The whole thing just feels hopeless and, while I know it isn't, I feel like I'm ready to grasp at any straw presented that may offer some benefit. Notice, I don't use the word benefit instead of cure because much like her Hypotonia there really isn't one.

Dr. S believes, since Rae is Hypotonic, that her Infantile Scoliosis is actually Neuromuscular Scoliosis. Okay, well that's just comparing a Pink Lady apple to a Sundowner apple, both apples have a similar taste and come from the same fruit parents (Golden Delicious and Lady Williams), but their color is slightly different. Similarly, there is no real difference between Idiopathic Scoliosis and Neuromuscular Scoliosis other than the cause. The treatments for both are the same and vary depending on the degree and type of curve.

So here are our options (listed in order of desirability):
  • Observation - Which is what we are currently doing and it isn't really recommended by other medical professionals since it delays treatment.
  • Therapy/Exercise - We are already have PT in place and Anna and I will be discussing this new development tomorrow. Exercises will have to wait until she is older due to their physically complicated nature: Scoliosis Exercises.
  • Chiropractic - My husband is not a huge fan of this option, but I'm willing to give it a go.
  • Homeopathic Alternatives - Like the Bach Flower, which is only one of many, and I have my Aunt checking into these options (she has a Doctorate in Homeopathic medicine).
  • Bracing - It's like encasing your child in a turtle shell. Here's an example: Providence Brace or when they are older this form may be an option Spinecor Brace.
  • Casting - Which varies depending on the type of curve and is usually done in case where the child is young (toddlers). Dr. S doesn't recommend casting and it can be quite the ordeal as evidenced by fellow blogger Emily, who writes about her son, at Infantile Scoliosis - J's Diary.
  • Scoliosis Boot Camp - Which utilizes various manipulation contraptions to readjust the spine and correct curvatures. This isn't a possibility until she is older.
  • Surgery (just a short sample of surgical options)
In light of this news, I am going to make every effort manageable to be proactive and try to keep a positive outlook. Keeping in mind that I must also be realistic (I have already reviewed the application for the Shriners Hospital for Children). I'm so thankful they don't take household income into consideration or we'd be screwed with a capital "S". In addition, I am going to do my best to see the good things, not just the bad, and take comfort that I have wonderful family and friends standing beside us every step of the way.

To quote my Mom:
"Damn, that can be depressing, but that's counter productive and I choose to be resolved (right after I scream). We are all in this together. We can do it." 

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