localcrafts
06-19-2010, 04:04 PM
Our son Max is 22 months, MOMS trial, prenatal surgery, no shunt, L2-S3 but presents as an L4. He was beginning sitting at 15 months when he started pulling up his legs when I tried to get him to bear weight. An MRI found a large epidermoid cyst and tethered cord. Came through surgery fine and over the few months gained function back. Now we are 7 months post surgery and he still isn't sitting.
He has always had night wakings where he seemed to be in pain. I would nurse him and he would calm down and go back to sleep. He is weaned now and still has the wakings. He arches his back and holds his arms up by his neck. We recently had a follow up MRI and his lesion site shows an enlarged area of luminesance (they used contrast), but otherwise everything looked good - vents stable. The uro just said his bladder and kidneys look good.
He took a long time getting head control and is still very weak. He spends half his time on his belly just laying there. I always felt his weakness was a result of his chiari, which was so bad in utero that they didn't see his cerebellum in the ultrasound.
But now I am starting to wonder if the boy has high intracranial pressure, but not enough to cause stridor or gagging or rapidly increasing head circumferences. Do any of you have any experience with this or have you had any of the intracranial pressure tests?
He has always had night wakings where he seemed to be in pain. I would nurse him and he would calm down and go back to sleep. He is weaned now and still has the wakings. He arches his back and holds his arms up by his neck. We recently had a follow up MRI and his lesion site shows an enlarged area of luminesance (they used contrast), but otherwise everything looked good - vents stable. The uro just said his bladder and kidneys look good.
He took a long time getting head control and is still very weak. He spends half his time on his belly just laying there. I always felt his weakness was a result of his chiari, which was so bad in utero that they didn't see his cerebellum in the ultrasound.
But now I am starting to wonder if the boy has high intracranial pressure, but not enough to cause stridor or gagging or rapidly increasing head circumferences. Do any of you have any experience with this or have you had any of the intracranial pressure tests?