aneurysm in 9 yr old

Posted By Dawn on November 08, 1998 at 13:32:02:







Hi...I need advice..my 9 yr old son has severe migranes (migraines) 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.