Tethered Spinal Cord and Weak Legs

Whitney chasing ducks in Boston Common

There's been some recent discussion in the Yahoo 1p36 Support group about tethered spinal cords in our kids and its symptoms.  A tethered spinal cord is one where  tissue prevents the spinal cord from moving appropriately within the spinal column.  Symptoms include lesions, hairy patches, dimples or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; lower back pain; scoliosis; and incontinence.

Melanie and I have discussed some of the symptoms that Whitney seems to exhibit.  She has a dimple, or small pocket in the skin, that is at the base of her spinal column.  At birth, the doctors were concerned and performed at least one ultrasound to determine there was no nerve damage. Once everything looked okay, it was kind of put on the back burner.  Whitney, and most 1p36 kids, are a little hairier than typical children, and most prominent, she has very weak legs.

At this point we're concerned that perhaps a tethered spinal cord might be a factor in Whitney's slow progress toward bearing weight and walking.  We're not sure she has this condition, though, so our pediatrician recommends performing an MRI on the area to see what's going on.  

I have to admit I'm not 100% convinced about all this because Whit continues to make strides in standing.  She has even started walking with more confidence while hanging on to someone with one hand.  (Credit goes to Whit's school teachers for working hard with Whitney on this.  Thanks!)

As with many medical tests, they take time to schedule and get the results.  So it'll probably be December before we can have the MRI taken.  We'll hopefully be able to do it in conjunction with a sedated ecocardiogram that we have scheduled already.

It'll be a few months but I'll post back with an update when we know more.  We want to make sure we remove any obstacles to Whitney being able to walk independently.  She watches her little brother, Liam, running around and wants it so badly.  We'll do all it takes so they can run and play together someday.