Hi gang... another big concern on mama's shoulders this week... I got a phone call directly from the pediatric GI doc today at about 4pm. The GI results didn't show anything that we didn't really expect anyway....however the xray did. Since they ordered an abdominal xray, you also get the extra bonus of a pretty good shot of the lumbar spine.
The radiologist noticed some abnormality in the lumbar spine view and brought it to the attention of the doctor. They are seeing something in the xray that presents like tethered cord syndrome. I know of this condition, and have even treated some kids post surgically at the clinic in Canandaigua. Now my hopes are that it is just a bad xray or a bad read.... but our next step is that we have to take Simon to Strong for an MRI under sedation. We should have a date for this by the end of the week after insurance gives pre-approval.
He's had an abdominal xray last autumn and pelvic/hip xrays 2 years ago....I'm wondering if they went back and looked at the lumbar spine specifically what they would see. The written results of these xrays only address the requested issues at the time, the past bowel obstruction and the hip clearance....so could anything have shown up and been missed back then??? I'm not sure.
If this is what he has it could explain the regression in his potty training and all of his bowel issues since September.... kids who have imperforate anus, foot size discrepency and club foot are more prone to having this congenital issue as well, hmmm sound like Simon?....(found that through the wonders of google tonight, which I have been utilizing way too much...)
Soooo, game plan...have the MRI and hope it shows up as a false alarm....but if these coincidences turn out to be an actual diagnosis of early symptoms associated with congenital tethered cord....then we are off for a visit with the neurosurgeon....
adventures, adventures..... so once again I'm asking you for prayers while we await answers.....
We hope to go to Syracuse tomorrow to try for our fingerprint walk in....if no one ends up at the doctor or home from school.... keep your fingers crossed....
Dan and I would love prayers for strength, sleep at night and a spirit of calm...
thanks guys....
Wow LIz - we will keep you and Simon in our prayers. I couldn't help but wonder why Simon would have tethered cord? Did he have spinal surgery? And clubbed footing - both of those are SO in our world of SB so I was very curious. Hope it can all get sorted out and in the best interest of Simon. Sending you love and hugs from GA!
ReplyDeleteHoping it's a false alarm too! Could you explain to us non-medical folks what it is and what the implications are? Thanks!
ReplyDeletePraying all goes well tomorrow. Can't wait to hear the great results! :-)
Shea has been on my mind since I crawled into bed last night. He popped in there and won't leave :) I've been praying for him over and over since then. So now I will add Simon to my prayers, too.
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