I am so sorry to hear about your son. I know that many months have gone by since your post, I pray that you are still around to post any changes or improvements or perhaps any help the doctors were able to provide. My heart goes out to you.
I wanted to ask if the doctors have done an MRI of the head on your son? If any of them have looked into the possibility that he may have something such as Arnold Chiari Malformation?
Praying that I will hear from you soon.
God Bless you, maridane