aneurysm in 9 yr old

[Dawn__0__0]

  Hi...I need advice..my 9 yr old son has severe migranes daily and nausea.  He also has neurofibromatosis type 1 and was operated on in September for a 1.3 x 1.3 cm. intracavernous right ICA aneurysm.  He can't go to school and doesn't sleep at night.  He vomits often.  The doctors here in NY say there is nothing more they can do because he is just chronically ill.  He had 3 spinal taps this month to relieve pressure and felt better for a short time (few days).  He has been hospitalized 6 times in the last 7 months.  He is taking zofran for nausea, diamox for fluid build-up, neuronton (an anti-seizure)medicine for pain, imatrix, baby aspirin, extra-strength tylenol.  They even prescribed valium but we are not giving it to him.  My husband and I don't know what to do anymore and would appreciate any suggestions.
Dear Dawn:
I am sorry to hear of your son with NF-1.  I think you need a second opinion.  It sounds like he has increased intercranial pressure.  It is no unusual for a child with NF-1 to get ICPs.  Has he had a recent MRI?  How is your son walking, can he gaze his pupils upward and outward easily?  I really think you ought to have him checked out by a pediatric neurologist (a second opinion) or have your pediatric neurologist take a second look at him.  The LPs having a therapeutic effect suggests increased intercranial pressure (ICP) and that a shunt might be required.  So, sooner rather than later, I would check this out.  It might be advisable to go to a center specializing in NF-1.  We do specialize in NF here at the Cleveland Clinic (1-800-223-2273, ex 45559). You do need to go somewhere, soon.  Best of luck.
Sincerely,
CCF Neuro:Pediatrics MD, RPS