Idiopathic Intracranial Hypertention a.k.a. Pseudotumor Cerebri

My five year old son has just been diagnosed with this.
It started the second week of October.  He woke up with a severe headache, neck pain, and vomiting.  I immediately thought something was wrong with his head, so I took him to the pediatrician that day.  They announced he did not have strep throat and said it was probably viral.  He was sick two or three days and then seemed to be getting a little better for a couple of days.  Then he was horribly sick again.  The pediatrician said it was more than likely the same virus.  He was sick two or three more days, then stopped vomiting for a couple more days.  Then he got sick again.
The doctor ordered an MRI and lots of bloodwork. He also had him go see an ophthalmologist.
Everything was fine, except my child was very sick.
Finally, last week, we took him to Vanderbilt in Nashville.  The lumbar puncture had an opening pressure of 55.  I knew that was not good.  They did a CT scan and then a CT scan with contrast.  That was fine.  They admitted him and ran several more tests.  They decided that this was IIH, better known as pseudotumor.
The ophthalmologist that looked at him there found his optic nerves were swollen but his sight was fine.
He was in the hospital the better part of a week.  We are now at home.  He is still having vomiting and headaches, but he is feeling much better. 
If anyone knows anyone who's CHILD was diagnosed with this, please send along my email: jessi0519 at gmail dot com. 
Thanks,
Jessica
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