Wednesday, October 29, 2014

Does Spina Bifida Cause Bone Density Issues? A Reader Question

I had an anonymous question on my last post that I really wanted to answer.  It was asked:

Is low bone density a side effect of Spina Bifida?  If so, why?

That is a great question!  Low Bone Density is not an automatic side effect of Spina Bifida.  However Spina Bifida is part of what has contributed to Mason's!  Because of the extent of Mason's paralysis from Spina Bifida he cannot stand or bear weight on his legs at all.  One large factor in strengthening a bone's density is USING the bone, applying weight and pressure to it. 

To combat that the plan has always been to use HKAFOs (standing braces) and a dynamic stander that holds Mason's legs straight and holds him in an upright position that would place pressure on his leg bones.  It was to be a therapeutic, several hours daily practice.  We started that process when he was a year old. Here is a post about Mason getting HKAFOs with pictures.  Here is a video of Mason learning to use the Dynamic stander.  He was 13 months old for both of those.

Unfortunately at 18 months old Mason's tethered spinal cord became symptomatic.  Over a 4 week growth spurt the stretching of the cord caused contractures in both of Mason's hips and feet.  They no longer went into a normal standing straight position.  That meant he could not wear his HKAFOs to use his stander.

What should have been quickly addressed with a tethered cord release was not.  He developed a sacral ulcer that same month that took 8 months to heal.  Until that was healed the surgeon could not do the tethered cord release.  8 months without standing or bearing any weight.  Then, once the detethering was complete and Mason healed we found that only one side of the body's contractures resolved themselves.  The right hip and foot needed tendons surgically released.  That happened this past August, at the 13 month mark of not being able to use equipment to stand.  That is over a year and in Mason's case that was enough time for the bone density to be lost and the bones to weaken.  Following that surgery he had the two month saga of casts and two broken legs from those casts. 

That brings us to today!  It is a really great illustration of how complex God created our bodies and how changes in one area affect so many others. We have seen this in so many ways with Mason.  One area affects another and what seems to be a single skill or ability is actually the interplay of myriad body parts and systems.  Imbalance in one area dominoes out to affect others. 

There are other factors that can go into osteoporosis (which is what Mason's bone density issue is called).  A lack of certain vitamins or minerals can affect the body's ability to build strong bones.  For example the body needs calcium, potassium, and Vitamin D available to build and strengthen bones.  Which is why our nephrologist has done a full blood panel on Mason to check his vitamin and mineral levels as well.  We should get those results next week. 

Thank you Anonymous for the question!


  1. Thanks for answering. Is there a reason Mason developed the tethered cord? or sacral ulcer?

    1. A tethered spinal cord is pretty common with Mason's variety of SB because the scar tissue from closing the back at birth often adheres to the spinal cord. That becomes problematic when they grow because the cord is not supposed to be stretched, it should be free flowing in the spinal canal. Stretching causes nerve symptoms and can do permanent damage.

      The sacral ulcer in Mason's case began when he scooted on the floor on his bottom (sitting up) and tore the fragile skin over the sacrum. Healing it was quite the ordeal!

  2. Tristan, I have really enjoyed reading these posts about the specifics of Mason's care! This info is very helpful!! Thank you for sharing!


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