How can I tell?

Hi everyone,

Just to give a quick background: my son caleb, who is 10 months, was diagnosed with Chiari 1 a couple months ago. He has swelling in the ventricles on the right side of his brain but she doesnt want to diagnose hydrocephalus at this point...I dont know why.

My question is- How will I know if he is in pain or having any problems? The Dr at strong(I dont know if any of you are from the rochester ny area but strong is the only ped neurologist around here) said that I should watch his eyes and his movement to see if he is having any problems. But she didnt really give me anything else to go on. He cant exactly tell us if his head hurts. Will this be a screaming in agony kind of pain? I kind of wish I had it to so I knew how he would feel so I can know if he is just being a 10month old baby, or if he is in serious pain. He has been doing this wierd thing recently where he bangs his head on the floor or the sides of the crib. He isnt crying all the time when he does it so it makes me think its not related but everytime he does one of those wierd things only babies do I think to myself, is this his Chiari???

Any help would be great. Thank you for being so supportive. Even just getting the emails telling me how you all are doing and coping with this is helpful to me. So thank you so much.


Im not from that area but when I first was diagnosed, I did research and found a couple of excellent drs for Chiari in that area. Google them and even if they cant help with babies, I bet they can get you in touch with a good one.

Good luck!!!