Originally Posted by Dippity Do

Dear Blueridge,

I am a mom of a teen with PTC. We've had a long road. About 1 1/2 years for a diagnosis, one year being ignored by a neuro, and now being treated for the disease in an agressive way at Children's Hosp in Oakland.

We have been dealing with this for 3 1/2 years. It's been horrible. My son missed most of middle school (home hospital tutor),and is being homeschooled for 9th grade because of it. Most normal activities are too much for him--light, sounds and even smells can make him worse. He's been on so many meds it concerns me that it's affected his growth.

He wakes up with a headache every day, and has been unresponsive to meds. He also has stomach issues that may or may not be related to this disease. He has frequent diarrhea and nausea, and for a long time would vomit at the drop of a hat.

He's had 7 spinal taps (LPs), including a temporary shunt put in to determine if a permanent shunt would help him. The temp shunt made him very ill and the "test" did not show his CSF pressure to read high. At that point the ns decided he didn't have PTC, so he took him off the Diamox. He then developed the one symptom he never had before--papilledema. (The docs at Children's never saw a child with PTC without papilledema before.) He had some vision loss over that two month time. It upset me very much. The neurosurgeon is still very hesitant to put in a shunt because they are so problematic, and he didn't do well with the temp.

He's a church camp right now, but when he gets home next week, he'll have three dr's appts to go to. One being a colonoscopy and endoscopy on Fri to make sure there isn't anything going on in there. He also goes to biofeedback once a week for pain. This summer we've had mostly 2 or more doc appts every week. It's been tough on him. So much running around.

The neurosurgeon and neurologist concurred recently that they are going to give him an LP every two to three weeks to try and permanently reduce his CSF pressure (ICP). This is to avoid a shunt. They said they have been successful with one other patient. The LPs come with risks, too, but my son really doesn't want a permanent shunt.

Anyway, if you'd like to send me a PM I'm okay with that. I hope and pray your daughter gets well--well enough to go to school and have a "normal" life. How's her vision? Any stomach issues? Bless her heart!

Please contact me. I've needed a support system, too!