PTC

My son who just turned 12 has been diagnoised with pseudotumor cerebri 3 months ago.  seems like a year.  so much has happened.  so tired.
searching for other parents who's kids deal with this disorder.  Maybe we can support each other.
he has some good days and some bad. Bad still ahead 2 to 1.  :(
We have decided not to let him attend summer camps b/c they are so far away from us and his doctors.   Makes me sad. him too.  he loves to go and do and now... this ptc has slowed him down. 
he hasn't felt like going to school.school sends teacher here 3 times a week for home instruction.  looking to enroll him in virtual academy next year. Deciding between k12 and connections academy.  Both seem good
My son was doing a lot better then got a tiny fever for less than 24 hours and he was sick with headache and nausea for TWELVE DAYS.  The neuro wasn't worried but I sure the heck was. 
he takes 1000 mg of diamox a day.  its helped his optic nerve swelling go down.  yeah. 
but he's still not back to his old self.  we have quickly learned to live one day at a time and when its a good day - get out and have some fun. 
This is not fun.