When the girl was 2 months old, I took a photo of her bum.  It was just so cute I couldn’t resist.  When I looked at the photo on the computer screen, I noticed that it wasn’t quite right.  What should be straight, was a bit crooked!  This was what started our journey.  We saw a neurosurgeon who ordered an ultrasound.  At this point, her bones were starting to ossify.  The doctor didn’t see anything of concern, we breathed a sigh of relief and drove home!

She always had problems with her gut.  Once we figured out the food allergies, she switched from too fast to too slow.  In fact slow is probably a generous term.  For two years she struggled, and we used every kind of laxative known to man.  That little crooked bum kept us thinking that there might be a problem that we should rule out.  In the spring of 2011, the gastroenterologist agreed that the girl should have an MRI so that we could rule out a problem with her spinal cord.  The results were:

“Borderline low-lying conus terminating at the superior L3 vertebral body level…focal fat attenuation and borderline thickening of the filum terminale, indicative of fatty infiltration/fall small fibrolipoma… findings are nonspecific, but do have an association with cord tethering.”

We returned to the neurosurgeon, and while he agreed that she needed physical therapy for her poor gait, he did not believe that she had a tethered cord.

Over the next year, we started PT for toe walking and OT for some sensory issues.  She grew strong and more confident and even started having normal bathroom patterns.  She potty trained quickly, and had no accidents.  I was just thinking “we might not have to go back to the gastroenterologist” when she started having some accidents.  She is 3, so we just cleaned her up and went on with things until she had an accident at PT.  Our PT is the BEST!  She knows the girl pretty well, and knew that this accident wasn’t typical.  She encouraged us to see our pediatrician who did a work up and an x-ray of the bowel.  The pediatrician also suggested a second opinion from a different neurosurgeon.  The girl had a backed up bowel that required a visit to the ER, and new questions about why she couldn’t empty.  The neurosurgeon looked at her MRI from last year and felt very strongly that she had a tethered cord – the findings on the MRI, the toe walking, the loss of bladder and bowel control… all of it points to a tethered spinal cord.  The neurosurgeon sent us to a urologist who conducted a CMG (urodynamic study) which confirmed that the girl’s cord is tethered.  That’s where we are…the cord is tethered and now we need to talk with the neurosurgeon about surgery.  How do you explain to a 3 year old that her back is what is making her tummy hurt?  She’s pretty bright…somehow I think she will understand…or at least trust us.