5 yr old with lumbar back pain/leg numbness

[SG2]

HI everyone, I usually hang over on the chiari board but I'm venturing over here for my son, hoping for some insight/tips/advice..

My 5 yr old son has been complaining of lumbar back pain and leg numbness x 2 months, progressively getting worse.  Pain is worse at night and first thing in am, numbness usually first thing in am (inside of legs).  Plus incontinence, has been potty trained over 2 yrs w/out previous issues.  I took him to pediatrician Monday who does neurological exam, which is abnormal.  She calls neurosurgeon while we are in the office to discuss this with him, and he says send him to the local Children's Hosp for admission.  We go to hosp, admit through ER.  ER finds neurological exam also abnormal (hyper reflexes in particular).  MRI of brain and spine are done and findings are NORMAL.  Good, right?  Yes and no.

So what's wrong with him?  Pediatrician was shocked when I told her they said it was normal, on the phone.  Besides get a second neuro opinion and GI consult, what else should I do?  OH, I should also note, he's chronically constipated and has been since birth.  Hirschsprung's was ruled out via intestinal biopsy when he was 3 yrs old.  Our regimen is still (and has been for over 2 yrs), capful of miralax daily and enema once a week (he cannot go w/out enema).  Please, just as a courtesy to me, please do not mention diet changes to me.  I have people comment regularly how well he eats.  It's NOT HIS DIET, and I am so sick of that response.  I am just so frustrated right now.

[selmaS]

  Hi...I am so sorry u r both dealing with this issue....and trust me, I know diet is not the answer if u have a neuro issue going on....

Have they looked for tethered cord? Possible signs would be lower back pain, bladder and bowel issues, leg issues, HA's.....

Does he have a sacral dimple, or an elongated brain stem....these could point to TC, as well as a neurogenic bladder, so a urdynamics test is usually done....

I know bcuz I have this in addition to my chiari...

what helps with the bowel has been probiotics and magnesium tablets, but talk to the Dr..since he is so small mayb one at a time and start with the probiotics first as there is some magnesium in them and it puts the GI track back in natural balance...it is the best thing I ever did.

I did the miralax and it did not work as well as the probiotics....but we r all different....but, I know how these conditions with the spine can affect our bowel and no matter how good ur diet is, it will not change the problem.

Good luck and keep me posted

[dan361]

I had and got the same thing. I'm 54 yrs old. I had a spinal fusion at S1, L5, L4.
The disks in the lumbar region deteriorated and was crushing nerves. this caused pain in lower back and numbing in both legs also constipation.
nurves being crushed at L5- L4 (large bundle of nerves) cause problems from tummy down to toes. Get in to a very good Nurosergen, I waited to long and now have perminant nerve damage. hope your little one does good and gets through it well.