Child Diagnosed

Hello everyone,

I am really hoping to find some support and real life experience to know how to help my son as we navigate through this diagnosis.

So just a little back story my son will be 5 next month. He has had chronic constipation since he was an infant. His GI doctor ordered an MRI to check for tethered spinal cord and a syrinx was found on the MRI that was done in January of this year. The syrinx was originally from T2 to the bottom of his spinal cord with the thickest part being at T8 and 3mm. We were sent to neurosurgery and have had a second MRI with contrast and brain scan. There is no Chiari or tumor found. The second MRI was done on 6/6/25 and the syrinx grew to 4.9mm at T8. We are having a 3rd MRI and glow study on 8/1 to look for arachnoid bands. Any information about this diagnosis is greatly appreciated as this is all overwhelming.