Hi Mike:

Our son is 3 1/2 years old and has SWCAH and, what we have been told, is mild Chiari Malformation.  We didn’t know about his CAH until he was 3 years old.  We discovered the Chiari at 15 months when we were still struggling with our son’s growth (he was failure to thrive) and a Doctor asked for an MRI on his pituatary gland.  His pituatary ended up being fine but they discovered that his "tonsils" (not the ones in your mouth  :0)  ) were 3-4 mm below his foramen magnum, which is mild Chairi.  We saw a Pediatric Neurologist who informed us that there was a 90% chance Kenny would "outgrow" it by 5 years old but that we should watch him for headaches, dizziness, sudden fainting or drifting of his eyes.  So far, he has had no symptoms that we are aware of.  It has been a little difficult because Kenny has had development delays and speech problems so we aren’t sure he could inform us of even having a headache. 

Do you know how low his tonsils are?  We were told that they don’t even perform surgery until they are really low (like 1-2 centimeters I think).

If you want to email me off board, I would be happy to talk to you.

Good luck!

Kristin