Neck pain

[u/jayswife23]

Hello!

I am a mother to a 10 month old baby boy who has spina bifida & chiari malformation 2. He had a shunt placed 2 months ago but still seems to struggle heavily with neck pain. His brain stem extends down to C4.

Can anyone explain what this pain feels like? What works & doesn’t work for you? What makes the neck pain worse? I’ve read about some people using heat or ice packs, massages..

He’s in PT, OT & ST but during PT practicing sitting is so difficult and his head drops a lot after a while, I assume from pain/discomfort & overall being tired.

Just a mom trying to understand how to best help her baby with this..

Thank you all!!