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joyschance

I found this group and joined a few days ago. I have

Posted by @joyschance in Just Want to Talk, Oct 2, 2012

I found this group and joined a few days ago. I have no idea where the message I wrote went. It is about my son. He is a most unusual case of IID/ Pseudotumor cerebri. It began when he was 9 years old. We spent many days going to Vanderbilt for spinal taps to drain him down. Any time he became ill {cold, virus, strep throat, etc.} his pressure went up. He went from advanced classes to failing school to eventually dropping out. Diamox made him very ill. Hemorrhaging around the optic disc. I was told they could not find another male child anywhere to match him with. It just doesn't happen to skinny 9 year old boys. But it happened to him. He is grown now. Still pencil thin. Our issue now is he needs surgery for a very large cyst on his left jaw. But everyone is scared to put him under anesthesia.

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